tag:blogger.com,1999:blog-17084292379788978402024-03-13T13:32:09.319-04:00waning light: life with dementiawaning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-1708429237978897840.post-89498521961769769552013-10-20T18:22:00.000-04:002013-10-20T18:34:09.664-04:00A change in perspective<br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Something has happened inside. An altered perspective that suggests that my focus might need to change. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I recently had two weeks away, with wonderful, reliable care for A. at home. A. had a nagging cough before and after that trip, resulting in two visits to the doc after my return. Prior to finding the right combination of medications to address that cough, he had a (small) physical and (large) cognitive meltdown. These events have awakened a new calculus for me. </span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><br /></span>
</span><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The cough began August 21. As of my return from the trip, he was coughing so much I took him to the doctor and we began increased inhalers. As of October 9, he was full of sputum (which he spit in sinks and on counters, </span>not rinsing at all, so they hardened into gluey 50 cent sized pieces everywhere), and at the same time he was urinating in his pants, in his PJs, on the floor and on the rug. Most sentences over three words in length were completely incomprehensible to him. I would ask, for instance, "do you want to put on your shirt?", and he would stare off into space, muttering, "shirt........shirt.....", as if it were a word in a foreign language. And he couldn't come up with words of his own, so it was nearly impossible for us to communicate about his needs.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I had recently initiated the practice of helping A dress in the morning and get ready for bed--mostly to head off this summer's growing practice of his tossing all his clothes on the bed and floor--way more than he could possibly have worn in a given period. Since I could not tell which was dirty and which was clean, I was washing almost all his clothes every washday. So, thought I, I would help him choose clothes in the a.m. and then put them in the hamper at the end of the day--keeping the room tidy, the bed clear of mounds of clothes. Ensuring he could find what he wanted and do all he needed to do to start and end each day. When he was at his worst from the 9th to the 12th, he couldn't even get dressed. I was stepping in urine on the rugs and on the bathroom floor, scraping dried mucus off counters and the sinks, dealing with wet underpants, pants and pajamas. We began to use male incontinence pads (greatly resisited for awhile, and besides, they wouldn't stick and thus were quite ineffective) and later full Depends, when A. was so out of it he didn't seem to care.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Even the smallest infection can seriously alter the cognitive ability of a person with dementia. As she or he recovers, the cognitive piece gets better as well, back to something resembling the old "normal", but not quite there. </span><span class="Apple-style-span" style="font-size: large;">Having finished a round of antibiotics, A.</span><span class="Apple-style-span" style="font-size: large;"> is cognitively improved, but not to where he was before he got sick. </span><span class="Apple-style-span" style="font-size: large;">I have observed many times that once you see a new behavior or decline in cognition, </span><span class="Apple-style-span" style="font-size: large;">it may come and go for awhile but</span><span class="Apple-style-span" style="font-size: large;"> over time it becomes permanent.</span><span class="Apple-style-span" style="font-size: large;"> To think of last week's picture as ever being what happens 'normally' just makes my heart break for both of us.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">So, A. has climbed out of last week's hole, but</span><span class="Apple-style-span" style="font-size: large;"> he is still coughing and "phlegming" a great deal. Hacking even more. He still has problems understanding many verbal exchanges and has trouble finding words he wants to say. He is getting up, walking into another room and standing around staring, as if confused as to what he wants and/or where to find it. He has fallen several times. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Do not read what follows as an angry rant. It is just a list. I am the nurse. I am the housekeeper. I am the professional shopper. The taxi driver. The social secretary. The bookkeeper. The med tech. The activities coordinator. The laundress. </span><span class="Apple-style-span" style="font-size: large;"> </span><span class="Apple-style-span" style="font-size: large;">The companion to a person of limited awareness.</span><span class="Apple-style-span" style="font-size: large;"> All that while keeping my own fear, anger and despair (in equal proportions) at bay and instead mustering cheer and interesting options for the day. Lately I have been more short of patience than I am comfortable with. Muttering to myself, "I am just the maid. The maid will do that. Leave it to the maid." Groaning (softly) out loud instead of silently when he once again falls, or cannot comprehend what I am trying to say as simply as I can, or when he can't come up with words and expects me to stand there patiently while he says, endlessly, "I want.....the ..... I want the........ the ......What do I want? Do you know?" I am actually good at guessing correctly. (He gives me a lot of time and opportunity to practice.) I am not mean to him. I do not yell. Yet </span><span class="Apple-style-span" style="font-size: large;">occasionally </span><span class="Apple-style-span" style="font-size: large;">my tension is clear in my voice and this disappoints and shames me. Although I 'get' it--this happens in a situation like this--I am not comfortable with behaving this way.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Lately, I am sharply aware that I just don't want to be doing all this indefinitely. (I could do it for quite a while if I knew there was an end in sight. But I don't see any end.) I want a life. I want a chance to have some freedom before I become old and sick and immobile. I want to take off and not have a plan for when I get back. I want to do stuff until <u>I</u> want to stop, instead of when I have to come home or fetch him or take him to an appointment. I want to run away--to see a movie, to go up the coast. To drive to another state--many states, visiting friends along the way, or maybe spend the night in a clean bed in a hotel in a place I've never been. I want to sleep late, or get up at dawn and leave the house, come home when I want to, stay out all night if I want to: see a meteor shower, or watch the moon. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">My life is melting away like an ice cream cone on a hot day--a cone I can't eat because I am helping to take care of my child's cone. But A. is not my child. I have no hope of his growing more capable, more interesting, more aware, more insighful, more companionable. When I had children to care for, I had every reason to look ahead with certainty for these things, and, in my husband, I had another grownup to share responsibilities with and to be my companion on nights and weekends. And I was in my 20s and 30s, not close to 70.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">Weekends. Last week it was a <u>three day</u> weekend. Friday afternoon rolls around and my heart sinks. Yet all around me, people shout out, "Have a nice weekend." There is not much one can do with A.--and even less with a sick A, like it was last weekend. Even on a good day, his balance is bad, so there is no safety for walking on trails or at the ocean. (He is S-L-O-W, so no walking a distance anywhere, really.) No hanging out in the nearby city, or taking the train to a really big city. His food habits are not pretty--since he cannot see well-- limiting the enjoyment of eating out. Besides, we can't afford it--we need the money for his care and his meds. He doesn't understand most tv series or movies. He gets mad at me if I walk too fast, or if I hold onto him to keep him from falling behind, or just from falling. He has no stamina. He falls asleep in the car after about 5 minutes. He needs everything explained, and still doesn't understand. He asks the same questions over and over. When I tell him something I am thinking about, he responds in platitudes, or little sermons about 'that's the way life is'. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">And so we are at home with one another a lot. Because he can't be trusted to be left alone anymore or to go out walking by himself, I am under a kind of house arrest--on the weekends it feels like it will never end. Yes, I can get A's companion over here to spell me, and I probably should do that more often, but it costs $60. for four hours, and I still have to watch the clock to come home by the deadline. Sometimes it doesn't seem worth it.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">A few days ago when I was looking (for the first time ever) at a residential setting option, the person I was talking to said that care is often a good thing for a relationship, because the well partner can resume being a partner instead of wearing all those hats I listed above. That made sense to me. Also, I think, residential care allows the well partner to resume being a PERSON again to herself. And yet I cannot imagine explaining to A. that he needs to go to The Home because I desperately need not to lose <u>my</u> life. But that is exactly how it is--and I fear I might otherwise never again have the freedom to do what I want to do, explore what I want to explore, tend to my own needs for novelty, intellectual stimulation and spontaneity. That he will outlive me, literally or figuratively.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">What has changed is I think about this often now. It's probably the last 13 years of care, now taking its toll. It's the not knowing anything at all about how much longer it will be. It's also the awareness that people I know well who used to walk this path with me have been liberated: their caretaking years are over and they are on to the next chapter. Several people I work with, several friends. I envy them, even at a time when they are grieving. I don't feel good about that, either. </span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;">I have no idea what I am going to do about this, but I don't think this new way of looking at things (from the perspective of what I need at this time in my life, instead of what A. needs) is going to fade. Internally, I have reached a new, quite uncomfortable, 'normal', this time relative to where I am more than where A. is. </span><br />
<br />waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com0tag:blogger.com,1999:blog-1708429237978897840.post-31126325894833324652013-10-17T15:29:00.002-04:002013-10-17T15:38:41.916-04:00a day in the life...<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<br />
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">A. requires a good deal of care. </span><span class="Apple-style-span" style="font-size: large;"> Aside from our time sitting with one another </span><span class="Apple-style-span" style="font-size: large;">talking, </span><span class="Apple-style-span" style="font-size: large;">watching tv, or going somewhere in the car, </span><span class="Apple-style-span" style="font-size: large;">h</span><span class="Apple-style-span" style="font-size: large;">ere is a day's worth of our interactions</span><span class="Apple-style-span" style="font-size: large;">. </span></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">I go upstairs when I hear him stir. (I now use a baby monitor, s</span><span class="Apple-style-span" style="font-size: large;">o this is not hard to hear.) On Repsite days, this is around 8am. I might have to wake him up, as it takes us at least 1.5 hours to get him ready for Respite. No more can I stay in bed until I want to get up, or, conversely, get up early and go for a walk or a bike ride. I go upstairs and I help him choose clothes. I take his PJs off the floor, where he drops all clothes he takes off. I help him put on his undershirt and underpants. (Several times in the last couple of months I'd find him up there with his undershirt around his waist, legs in the sleeves, looking confused. Or wearing several shirts, often short sleeve tees or polos one over the other, or over long sleeved cotton shirts. Shoes on the wrong feet. Buttons all buttoned wrong. So now I help him get dressed.) I redirect him several times as he gets distracted. I explain where things are, which parts of the clothes are 'back' and 'front', which shoes are 'left' and 'right'. He cannot understand this without my explaining and showing numerous times. Ultimately, I send him to the bathroom to shave. </span></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">This gives me time to go downstairs where I assemble his many meds. When he comes down, I show him anew each time how to use his inhalers, remind him to take his pills, help him find water which he has put down and then can't find, prevent him from spitting onto the counter or into the clean dishes in the drainer. I get his breakfast, timing the various parts so he does not get up and start to wander. I put on music for him to listen to. I make his lunch for Respite. By now it is 9 or 9:15. I <u>may</u> have used the bathroom myself, <u>may</u> have brushed my teeth, but at this point I have to rush to get dressed and presentable to take him to Respite. Two out of five days I have time to eat my cereal before we head out. In the last two and a half weeks, we have been on time for Respite exactly once. 15 minutes late is the norm. (One hour and a half to get up, dressed and ready for Respite--that seems like a long time.)</span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><br /></span><span class="Apple-style-span" style="font-size: large;">Two days a workweek I go right home to work with my clients. The other three days I do laundry, keep the house tidy, get food shopping done, keep the business and household bills and records, go to the pharmacy for him, cook, take care of garbage and recycling, maintain the garden, make appointments, purchase and maybe alter his new clothes, research care options, make medical appointments or take him to same. The day flies by. Sometimes I get to sit a bit, and from time to time I admit I waste that time getting lost on the computer, but this is not frequent. </span></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am always looking at the clock, as I need to be back at Respite at a certain time. What doesn't happen is time to follow my nose, take a day trip, get regular exercise, do some art. After that, it's home with A. til bedtime. I take about a half hour to get A. settled after his arrival home, otherwise he's standing and wandering around the house. I continue errands of the day--finish wash, find something for dinner, return phone calls, keep order, water plants. I catch the news only in spurts as I'm buzzing by the tv he's watching while I prepare dinner. I sometimes ask him about a story I've just come into the middle of. He has no idea what he is watching most of the time. </span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I finish cooking and cut up his food. Serve him his meal. I clean the frequent spills when he flips his water glass or a bowl due to failing eyesight and very poor spatial awareness. I serve myself as soon as I can. He's halfway done before I even sit down. We eat in front of the TV so that I can avoid sitting at table with him and watching his awful eating habits and experience the sad fact that we rarely talk about anything remotely interesting. Conversations go nowhere. After eating, I clear the dishes, clean up the kitchen. </span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">By that time, it is often 8 or so. He is ready for bed prep around 8:30 or 9--and this, too, will take about an hour. I make sure he gets his meds (which he could not manage on his own), find his pajamas, help him to put them on. Remind him several times to do the next thing, otherwise he gets lost and stands around some more staring confusedly. Some reminders don't compute. I say, for instance, "Do you want to take off your sock?" and he looks on the floor all around him for the sock, having no concept that he is still wearing it. I prepare the bed, put away the clothes he's tossed on the floor as he takes them off, I put his covers on, find some music he wants to listen to, and kiss him goodnight. </span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am usually on my own from 9:30 pm on. By then I am tired, but don't want to go to bed, relishing time that isn't distracted by his needs or demands, time that is finally mine. I usually go to bed around 10:30 or so. I no longer take a shower each night or wash my hair every morning--not enough time, and I am too exhausted. I fall into bed, read three pages, and go to sleep, where I often dream dreams of too much work to do, babies that I am responsible for that are in danger, or, occasionally, a man who is intellectually and spiritually young, funny, tender, smells good, kisses tenderly, and makes me swoon. He is always gone when I wake up once again to hit the floor running with the next day's routine.</span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;"><br /></span><span class="Apple-style-span" style="font-size: large;">I plan things I believe are reasonable to get done in a day, yearning to get closure on the chaos that is this life with dementia. I rarely get my meager goals completely accomplished. It used to frustrate me so much--simple things like clean a closet, take an hour to create order in a corner, go to the town hall <u>and</u> to the bank on the same day, maybe to the pharmacy <u>and</u> to the fabric store in one trip. But this hardly ever happens. There is no time. I am better than I used to be at simply postponing things until tomorrow. I don't really know where the time goes. It just goes, and I have been active most of the day. Maybe a couple of hours a week, I will get to have lunch with someone, or create some art, or read or take a nap. But these things are definitely not part of a typical day.</span></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am fairly certain that this day's routine is by no means unusual for those who live with a person with dementia. Many people face much more difficult routines, if there is incontinence or if verbal or physical outbursts are a part of the day. Fortunately, this is not the case for me, at least not on a regular basis.</span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: large;">Tomorrow I will post how this routine of ours </span><span class="Apple-style-span" style="font-size: large;">lately</span><span class="Apple-style-span" style="font-size: large;"> has affected my thoughts about my life and where it is going</span></span></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-VnXowfuDhhU/UmA6eAK6TGI/AAAAAAAAAGQ/pVqYDZJZSqU/s1600/DSC09847.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" height="300" src="http://1.bp.blogspot.com/-VnXowfuDhhU/UmA6eAK6TGI/AAAAAAAAAGQ/pVqYDZJZSqU/s400/DSC09847.jpg" width="400" /></span></a></div>
<div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">.</span></div>
waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com0tag:blogger.com,1999:blog-1708429237978897840.post-50997819047940994182012-12-31T14:10:00.000-05:002012-12-31T15:33:12.464-05:00to friends and family of people with dementia <div style="text-align: justify;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">You probably wouldn't be visiting this site if you weren't in some way touched by someone with dementia. </span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Perhaps it is your parent who has this illness, maybe it's a friend. Or instead it might be a sibling, a neighbor, a spouse. Perhaps the person you care about is related to or acting as a caregiver for the one with dementia. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">You wonder how you can be helpful. And a</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">t the same time you are frightened by the spectre of a mind's parting ways with reality, with memory, with the ability to function through daily activities. Maybe you have some ideas about what a person with dementia looks like--possibly from a visit to a nursing home, a hospital, perhaps from a movie or a book. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If you are being really introspective and honest, the idea of dementia scares you silly.</span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">But here's the thing. It's an incredibly lonely, frustrating and sad experience we are having--the one with dementia and the spouse/caregiver as well. The more pronounced the dementia gets, the more lonely, frustrating and sad it becomes.</span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I imagine you are saying to yourself that you don't know what to say, or what to do. If, therefore, you say nothing, or do nothing, you are amplifying our loneliness, our sadness. We do not expect you to have some cosmic thing to tell us about our situation. We know full well there is no such thing to say. We do not imagine that there is anything earth-shattering that you might do to 'fix' things. (Seasoned caregivers have long ago given up the notion of the 'fix'. There is no 'fix' to this illness.) </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Mostly we are just trying to get through another day.</span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If you want to help but don't know what to say, or what to do, just show up somehow. Come by and keep one of us (or both of us) company. Offer some respite for the caregiver, by keeping the other company for a bit. Tell us some jokes. Talk about old times. Bring brownies, or soup to share for lunch together. Something from your garden. Bring a photo from "once upon a time when", and reminisce. Listen to stories, even if they are repeats.</span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Dementia isn't catching, and it is not particularly scary to witness. Mostly, it just requires a slower, simpler pace. (That is, if you are not counting the loss, but you don't need to talk to us about our loss.) We want diversion. We want connection to those with whom we have shared love and good times in our better days. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Try to avoid filling the time with tales of your last trip, cultural adventure, romantic date, new house or couple's project. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We are happy for your freedom and your vivid connection to life. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">We had great plans for our time together at this stage of life, and we grieve silently every day for those dashed plans. Comparison of fortunes is hard to avoid--particularly for the caregiver, whose once open-to-anything life is likely to be reduced to the mundane activities of looking after a person with significant limitations. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Try not to tell the caregiver that you don't see that anything is "that wrong" with X. I know you mean well, but to us it feels like you don't believe us when we say we find things difficult. It feels as if you might be suggesting that your experience trumps ours, and you imagine we are somehow exaggerating. You may see an unexpectedly well-functioning person in your brief encounter. Heaven knows she/he is working overtime to rise to the occasion of your visit. What you won't see is how much it takes out of him/her when you leave--how much sleep is needed to recover from the effort. But come anyway. It is worth the effort expended to be connected </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">for a time</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> to people we love and miss</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">.</span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If you tell the caregiver to let you know if there is anything you can do to help, do not be surprised if she/he never asks. It is hard for us to ask for help--it's one of the top five challenges of the caregiver, really. Put yourself in our shoes. You probably would have difficulty asking, too. Instead, take action. Call up and say you want to come over, or want to take X out for ice cream, or lunch. Bring over a movie to watch together (not a complicated one). Tell us you are going to the store and you wonder if there is any odd thing you can pick up for us for tonight. Better still, tell the caregiver you are going to ____ in a week and wonder if she/he can arrange to get some coverage so you can go together. Often it is the caregiver who is starving for normal experiences. Dementia narrows one's experiences drastically, a fact that is particularly hard for the caregiver. </span></span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Finally, it is fine if you ask, "how is X doing?" and talk about how sad it is that his/her life has become so limited. Please, however, be mindful that this illness limits both people in the couple, provides deep sadness and loss to the caregiver/spouse as well. It means so much to have this acknowledged every once in awhile. It makes us caregivers feel visible. Human. Understood.</span></span><br />
<div class="separator" style="clear: both; text-align: justify;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Don't ever imagine you have nothing to give.</span><br />
<span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Connection. Presence. Showing up. Laughter. Diversion. Friendship. If you have been close to either one of us, this is what our time together </span></span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">consisted of </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">before dementia. See, you do know how to do this. By heart.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-93gaDDh9hgc/UOHiPdEsjEI/AAAAAAAAAFw/enRI58wvj2k/s1600/DSC04188_2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-93gaDDh9hgc/UOHiPdEsjEI/AAAAAAAAAFw/enRI58wvj2k/s400/DSC04188_2.JPG" width="362" /></a></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<br />
<br /></div>
<div style="text-align: justify;">
<br /></div>
<div style="text-align: justify;">
</div>
waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com8tag:blogger.com,1999:blog-1708429237978897840.post-72621855669539650362012-09-03T15:23:00.000-04:002012-09-03T15:38:44.064-04:00at the store<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div style="text-align: -webkit-auto;">
<div style="text-align: center;">
<a href="http://3.bp.blogspot.com/-6cB8Pj0L8Ic/UEUFwcdI8xI/AAAAAAAAAFQ/X7hAV02xW3g/s1600/images-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-6cB8Pj0L8Ic/UEUFwcdI8xI/AAAAAAAAAFQ/X7hAV02xW3g/s1600/images-1.jpeg" style="cursor: move;" /></a></div>
<div style="text-align: center;">
<br /></div>
</div>
<br />
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">There is no winning for either of us at the store. </span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Since A’s balance is bad, he pushes the cart. Since his proprioception is not so hot, either, he steers real clear of obstacles. This means if there is someone up ahead, he stops about halfway down the aisle so as not to bump into them. Won’t move til they move. (I won’t even go into the problems with the mid-aisle displays in the grocery store.) At the head of an aisle, turning corners, this slowing down and hanging back is inevitable. It just takes way longer.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Because some of his side vision is obstructed due to previous brain hemorrhages, he likes to walk behind me, not next to me. I think he also likes to walk behind me so he knows where to go, though he denies this. Because he has dementia, in addition to first paragraph issues, he goes really really slowly. R-e-a-l-l-y. S-l-o-w-l-y.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I also think he gets way overstimulated with lights and displays and people. This adds to his confusion and further slows him down.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The problem is pacing. He is proud of the fact that, as he says, “I am never in a hurry.” Unstated words are, “...like you are all the time.” Yet as slowly as I might go in the store, he goes slower. And since he keeps me ahead of him, I do not know if he is keeping up or is back in the reeds unless I constantly look behind me. On purpose, sometimes, I slow down to allow him time to catch up with me. He just slows down, too. I can be practically crawling down the aisle, and he can be found stopped in his tracks, halfway back, waiting for me to start moving again. Yet, according to A., I am speeding through the store with no consideration for him and his more leisurely pace of life. </span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">If I am not in his eyesight up ahead, he is lost. If I round the aisle to the next one (which is the exact wrong spot to stand and wait) and he is not right behind me, he stops dead at the end of the aisle and has no idea what to do next. This is interpreted as my inconsiderately leaving him behind.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I thought I had cracked the code when I started to hold on to the end of the cart. Not to pull, unless he was doing one of those “stop mid aisle so the object 12 yards down doesn’t pose a bumping hazard” moves. Most of the time, it seemed to be a perfect solution in that I knew where he was, he could see me, and we could get out of the store in less than 45 minutes after buying 10 items. However, that is “treating me like a child”, and therefore not acceptable.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The secondary problem is frustration. On both our parts. By the time we are halfway through the store with my being expected to have eyes in the back of my head and his needing to go unreasonably slow, I often am actively talking to myself in an attempt to not run like mad out of the store, get in the car and drive to Oklahoma to start a new life. He, on the other hand, is equally frustrated--feeling that I am whizzing him through the store in an unkind and unreasonable way.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I have attempted to talk about this with A. so many times. The most recent time was today. I explained that if I cannot see him, I cannot know how to go at his pace. I asked him if he could help me to go his pace by walking alongside me. He complied, but not without Attitude. The very next store we went into (this was errand day), it was as if we never had that conversation at all. </span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I do go shopping by myself. Often. But he needs to get out, too. He likes to see the world, cruise the aisles, choose his own 5 food groups (ice cream, oreos, vodka, donuts and ice cream). Often, it is on the shopping trips just for his faves that we have this trouble. ...And so far I have not yet been able to persuade the manager to have all his favorite items on the same shelf in the front of the store right by the check out stand.</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Anyone else experienced the "at the store crazies”? Did you find a solution?? </span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">or....Does anyone know how to start fresh in Oklahoma?</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span><br /></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">;o)</span></span></div>
<div style="font: 12.0px Helvetica; margin: 0.0px 0.0px 0.0px 0.0px;">
<span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></span></div>
<div style="font: normal normal normal 12px/normal Helvetica; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;">
<span class="Apple-style-span" style="font-family: Times; font-size: small;"><a href="http://3.bp.blogspot.com/-lhOwYJ6-KwE/UEUB6Td6TBI/AAAAAAAAAFA/fR01nVRGjlw/s1600/porchweb+2+wm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="http://3.bp.blogspot.com/-lhOwYJ6-KwE/UEUB6Td6TBI/AAAAAAAAAFA/fR01nVRGjlw/s400/porchweb+2+wm.jpg" width="400" /></a></span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span style="letter-spacing: 0.0px;"><br /></span></div>
waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com6tag:blogger.com,1999:blog-1708429237978897840.post-13581585593738463262012-08-05T20:39:00.000-04:002012-08-05T20:41:06.494-04:00Pause<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> A cool breeze is filtering into the room after a long stream of hot and humid days and nights. With summer windows flung wide open, soft rain gently patters on leaves, pavement, skylights and roof. It is almost dark at 8:05, and one of 'my' cardinals is chipping just outside the window near the porch feeder. This lovely creature visits several times a day. Here in the gentle rain, she says goodnight.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Before I am ready, winter will be back, and these sounds and these whispers of sweet fresh air will be a thing of memory. This is time to savor. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Amidst myriad chores, obligations, and countless caregiving duties, here is our beautiful, peaceful world inviting me to slow down and participate. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Quiet, Mike. Breathe. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">All the rest will be here tomorrow. But this here, this is NOW. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">This is what I need.</span><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-loOfjEg8T2I/UB8REnfJVFI/AAAAAAAAAEw/2Mq2EKd0BfQ/s1600/DSC00587_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="352" src="http://2.bp.blogspot.com/-loOfjEg8T2I/UB8REnfJVFI/AAAAAAAAAEw/2Mq2EKd0BfQ/s400/DSC00587_2.jpg" width="400" /></a></div>
<br />waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com1tag:blogger.com,1999:blog-1708429237978897840.post-73114935665336443572012-05-23T21:59:00.001-04:002012-05-23T22:09:10.904-04:00Weeding the garden<br />
<div style="text-align: justify;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I had today off, and woke filled with thoughts of doing a number of pleasing creative projects, having just jumped over the hump of bill-paying, bookkeeping and account reckoning </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">(three weeks tardy for this month, but all caught up and recorded through next month. Enormous relief.)</span></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"></span><br />
<div style="text-align: justify;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">
</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Yet I lingered in bed on this beautiful morning, as I usually do. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> When I ventured outside the room, A. needed help finding a pair of pants he had put away but forgot where. He asked for three books to be downloaded from Talking B</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">ooks and put on a flash drive for his reader. I cleaned up some clutter in the kitchen, paid a couple of bills and ordered new checks while waiting for the books to download. Finally ate my cereal at around 11 am. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Then went out to A</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">'s garden with him to weed. A. used to be a talented and enthusiastic gardener. I have never been a gardener. Although I have always appreciated his beautiful garden, I have always preferred to walk, take photos, listen to birds, watch the clouds. A. has taught me the little I know about the garden. Today t</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">he weeds were extensive, and they were confusing to me, as I really don't know what I am doing. A. no longer recognizes any of his plants, does not know how to tend them, and cannot distinguish between what is a weed and what are the plants. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">This is painful for both of us--it has brought each of us to tears many times. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Today I set him near some weeds and showed him how to pull them, then started in the garden myself. Spent about 1 1/2 hours there. I had started to weed last weekend, and today managed to get around to about two thirds of the garden. So many dense, long lateral-trailing roots to remove. Unsure if I was pulling up good plants in the process. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">It is certain this garden has not been weeded in at least two years. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I looked over after about 1/2 hour of our quietly working together in different areas, only to find A pulling out grass by clumps outside the stones that ring the garden, leaving a large dirt area where the grass should be. I re-directed him to the weeds inside the stone ring, but he had no idea what I was talking about when I referred to "inside" the stone border. Explaining this took about 10 repetitions, and I could tell he still did not understand. Much of the time he was not even looking where I was pointing. Twice I put a stone marker where there were numerous weeds. He said he still could not "see" them. Didn't know what I was referring to when I said, "Pull out these plants here." </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">When I thought he was finally in an appropriate place, I went back to weeding, only to look over and find him pulling up grass again outside the garden. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I re-directed him again, but he kept losing focus, interest, or his place. Said he didn't want to do this, he doesn't know how to do it, and he "doesn't have to". I got him a scissors and encouraged him to cut the grass shorter at the edge of the stones where the mower can't reach, as this appeared to be upsetting to him and likely was the cause of his pulling up the lawn. He settled down to it, like a hair stylist creating a punk "do"--cutting one blade at a time, leaving adjacent blades long. Then he abruptly went inside, leaving all weeds, tools and containers for me to deal with.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I came inside about a half hour later and found him sound asleep in his chair.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I still had another plant to pot, but a hole needed to be drilled in the bottom of the pot and I was by then tired and frustrated and hot. Using power tools scares me, and is another thing I've never had to do, so I have no confidence or skill. So at around 1:30, I had a cold drink and read the paper. Soon I found myself dozing in my chair while watching clouds, so I went to bed and instantly fell asleep. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">After I woke, I was sure that there would be still more of his needs that had to be met waiting for me when I rose. (And there were.) There was also supper to prepare, a couple of work calls to make. Wash to do. Mail to get and go through. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">My free day for creativity was shot. Not wanting to face all those further interruptions, </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I just lay in bed, awake. Trying to capture some peace, if not creativity, in the day.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">This is how I spend my life. Doing the best I can to</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> be loving and supportive to this man who looks like the man I married, but is actually anywhere from 10 years old to 2--in an old man's body. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I miss my husband, my partner, MY helper and supporter. He has gone away. For good. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">...and left me alone with this often-helpless man-child to love and to find a way to cherish.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">amen</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span class="Apple-style-span" style="font-family: Times; font-size: small;"><a href="http://2.bp.blogspot.com/-2t1gT2YpGio/T72VwTS4RkI/AAAAAAAAAEk/r66mJE_uY0Y/s1600/P1050710_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="388" src="http://2.bp.blogspot.com/-2t1gT2YpGio/T72VwTS4RkI/AAAAAAAAAEk/r66mJE_uY0Y/s400/P1050710_2.jpg" width="400" /></a></span></span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com3tag:blogger.com,1999:blog-1708429237978897840.post-65898509449544744582012-04-30T23:45:00.000-04:002012-05-01T14:18:17.125-04:00tired<br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We are in another state visiting our daughter and family. I am coming down with a chest cold, which I caught from my sweet granddaughter. It's the end of the day, and she is in the other room, resisting mightily going to bed. The little one</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> keeps crying; complaining about needing to poop, needing water, needing her lovey, etc. This ordinarily wouldn't bother me much--a developmental issue, is all. Our daughter is an excellent mom. She will handle it well. My husband is bothering me, though, tremendously, and our granddaughter's crying puts me over the edge. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">How am I to maintain any semblance of serenity when he seems so unbelievably aggravating on an ongoing basis? </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He and I have been together all day, and I feel as if I am going to explode with frustration and anger if A. doesn't stop talking to me for awhile. L</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">ately</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> he mumbles in this throaty, faint way, full of fumbles and re-starts due to a multitude of unremembered words. He keeps trying to explain himself. Even though most of what he wants to say (assessed through my current filter of fatigue and lack of much patience) is not worth the effort to begin with. Most recently he wanted to remind me that when our kids resisted going to bed, we went in and rocked them. Problem is that we rocked them when they were infants. Our grandbaby I is 2. Rocking is not the answer at this age. I respond in what I think is a kind and thoughtful way. He doesn't understand me. I have to repeat myself, say things differently, hoping for a better outcome. Today, with laryngitis setting in, it has been a huge effort.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">At the same time, I am trying very unsuccessfully to download a talking book for A. I am trying to prevent what has been happening in the last few days from happening anymore: A sits for what seems like hours in a darkening room and stares off into space. This makes me nuts. This behavior appears to me to be asking for something. I translate this into, "Here I am at L's house. There is nothing to do, everyone is paying attention to the baby." He has made up his mind for unknown reasons to resist any attempts on the part of others to turn on the tv for him. Watching tv at this time of day is what he usually does. For all I know, all he does when the tv is on is stare at that, too. But his sitting and staring inspires something in me that feels like, "If he is unable to amuse himself, it is your job to set something up that will stimulate him. Entertain him. Sustain what is left of his mind."</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">When A is not staring into space, he is either ritually unpacking and repacking his suitcase looking for things, or heading out to the nearby shopping center for the third, fourth, fifth time in the day. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I think about patience. I do not want to yell at him. This is not his fault. But damn, it is not my fault, either. I don't feel well. I want to go to bed. He will go to bed if I do. I do not want that. I want to be by myself, finally, while I sleep. I want to enter the oblivion of sleep without him awake beside me tonight. His presence can delay sleep, reminding me of all I have lost, all that needs doing, and the utter futility of most of it.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">So, even though he said to me about 15 minutes ago he was going to bed, and even though I encouraged him to stay up for a few minutes to talk with our son and grandson if they called (and now they haven't called), when I tell him it's ok for him to go to bed he says he'll stay up, he's not tired. Ten minutes pass, then he tells me he's going to bed. This is one of the many things that make me crazy. No matter what he says, he </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">reliably </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">will contradict himself in a matter of minutes. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">My tired spirit yearns for this nightmare to have a predictable end. (And yet that end I wish for would mean the end of my husband's life.) I tell myself I could do most anything with a predictable end. I'd cope in part by counting down the days. Fantasize about what I would be able to do when this is over. Be busy making plans to go places, be with friends, be alone, sleep, create things with the energy I now spend simply to perform maintenance, plodding ahead one day at a time. This type of dementia has no predictable end, however. Who knows how long? My fear is that when it ends, I will be in my 80s, my relative youth spent, nothing left of me to begin again.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I know the message for me right now is 'self care'. I should remind myself that I didn't cause this, I can't fix it, and I need to look after myself. And I am doing the best I can. And that A is well enough cared for--it is <u>I </u>who needs looking after. Yet I keep looking for something a little more original. A new way to look at things. An epiphany that makes it easier to stay the course. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">What I know, however, is that tomorrow will come, and an indefinite number of tomorrows after that, and we will all still be here, including this mostly gentle, benighted man who is masquerading as my husband. And he will need care, and patience, and loving companionship, and this is how my life will be. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br /></span><br />
<div class="separator" style="clear: both; text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; margin-left: 1em; margin-right: 1em;"><img border="0" height="170" src="http://3.bp.blogspot.com/-w00u0b5VGZI/T59XSwCnnsI/AAAAAAAAAEY/txeQkwZ6aPE/s400/_MG_4731_2.jpg" width="400" /></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> </span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com1tag:blogger.com,1999:blog-1708429237978897840.post-19662917912613016502012-03-21T21:27:00.001-04:002012-03-22T21:53:28.196-04:00an insight<div style="text-align: justify;"></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">I have mentioned the book<i> Ten Thousand Joys, Ten Thousand Sorrows</i> by Olivia Ames Hoblitzelle. It is the first book I came upon that was written by a <span style="text-decoration: underline;">spouse</span>--of a man with advancing Alzheimer’s disease. She is a fine writer--insightful, and able to speak in psychological terms re: her experience as well as her husband’s. She is steeped in Eastern (Buddhist) approaches, yet doesn’t sound too holy or self-righteous. Here is a journal entry of mine from over a year ago after having read this book. It is still fresh and relevant in its ideas and its message.</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><br />
</div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;">Nov. 6, 2010</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">This book has turned up at the right moment for me in my journey toward ‘acceptance’, I’m not sure I would have “gotten it” before. Who knows, however, maybe I wouldn’t have struggled so much in the last years with anger and frustration if I had found it earlier. </span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">Here’s my insight:</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">There seem to be two parallel but distinct paths I am on. In some ways they can intersect, but in other ways they have lead to confusion and frustration. It seems to me what she is saying is that <i>acceptance</i> and finding <i>opportunity</i> in what <span style="text-decoration: underline;">is</span> are both very central. One path is that what I am to accept and "go with" is the acceptance of A's diminishing abilities and interests. Acceptance of his movement into confusion, silence, closing down of pastimes, activities. The <i>opportunity </i>here is to live more simply, be more in the now, savor what is, etc. The other path also involves <i>acceptance </i>and<i> opportunity</i>, but here the acceptance is about the requirement for me to step up and be <u>more</u>--both in order to cope and function for the two of us, but also so that I don’t fall by the wayside while walking A's path with him. Here the <i>opportunities</i> are ‘burning through Karma”--realizing heart and soul growth, finding the way to live in compassion and tenderness while still growing and exploring as-yet unexplored strengths and pathways in life.</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">I think in the past I have been focused on the loss--loss for me of what A. was and what I used to be. The loss of our once-working relationship as it was, and the plans, hopes, and freedoms of this last time in our lives before we have to give in to age and infirmity. There has been deep sadness regarding his losses (which I have been only too quick to label as unwillingness instead of inability). But here it seems my challenge is to <i>press forward inside myself while allowing A. to step back</i>. It is a hard thing to automatically adjust to--particularly since in retirement years the idea was that we were to press forward with each other like two draft horses, or skating partners. Therefore the idea that what happened to him meant things would happen to me in the same direction, and vice versa. </span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">Now the challenge is to figure out how to remain connected to one another while A. quiets down and I keep growing and developing. Doing my growth in some kind of deep tandem with where he is. It certainly is daunting to think about. Yet it also has elements of release for me. It's a release of sorts to consider that it is a necessary part of my spiritual journey to keep developing--developing parts of myself both in response to what happens to him (finding compassion and tenderness and new means to togetherness) and at the same time allowing parts of me to grow in other directions, too, so that there is substance left to me as he continues to journey down into dementia. </span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">On the face of things it seems to be unequal, looking at things from my perspective. Underneath the surface, of course, A. is actively adjusting to loss and change all the time, and that is a piece of work. But seen with more self-involved eyes, it seems he gets to rest and let go while I have to work hard to figure out how to still grow and cope and keep alive. In a way, though, that arrangement suits my nature--if the shoe were on the other foot I think he would sink with me--be less able to do the forging ahead. (But maybe I am thinking of A. as he has become instead of who he was. It has been so long that he has been losing himself.) In any event, I have always been the ‘going out’ person of the two of us--the seeker of new things and people, the conscious worker at understanding and developing new aspects of myself in relation to him and to the world. </span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 16.0px;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-pMRhvbkennk/T2p_nRCdhrI/AAAAAAAAAEQ/nM84p6ATfZM/s1600/DSC08958_2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="317" src="http://4.bp.blogspot.com/-pMRhvbkennk/T2p_nRCdhrI/AAAAAAAAAEQ/nM84p6ATfZM/s400/DSC08958_2.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: large;">An aside: Right now as I sit here I am fighting the thoughts that I ‘should’ be doing something more ‘purposeful’ with this afternoon: cook, sew, knit, do bookkeeping for the business, etc. But I am forcing myself to stick to what is happening right here. Oh the hobgoblins of DUTY!! And oh, the challenges of finding enough TIME!)</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: x-large;"><br />
</span></div><div style="font: 14.0px Georgia; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-size: x-large;"><br />
</span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com2tag:blogger.com,1999:blog-1708429237978897840.post-81145171525412355842012-03-12T00:23:00.000-04:002012-03-12T00:23:27.875-04:00a 'stuck' place<div style="text-align: justify;"><i>Here's an example of a place we regularly get stuck. We had a variant of this conflict just last night, although what happened below took place a while ago</i>. <i>These days I try hard not to belabor anything, to explain less and exit as soon as I see trouble brewing. It still comes out of left field, however, no matter how I set my radar. The pattern, no matter how I try to duck it, always delivers us to the same place in the end. From a year or so ago:</i></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Circumstances: I left for work at 8:45 am and return about 6:50 pm. Tired. Hungry. Knowing there will be nothing prepared for me for dinner. My husband is in the TV room, and greets me enthusiastically. He is eating an apple. He has obviously finished his meal. I tell him I am tired; it has been an exceptionally long day. He keeps eating the apple as I warm up leftovers. He moves the tv table away from his chair so I can use it in front of mine. We are watching the news. It is now maybe 10 minutes since I have gotten home, and 5 minutes after I had sat down to eat. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He starts talking over the news to tell me about something he needs me to do to help him. Nothing of great urgency, though he clearly has been thinking about this most of the day.</span></div><div style="text-align: justify;"> </div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">His request is confusing and predicts a complicated series of steps to work through to a solution. I begin to ask questions--in a voice that quite likely betrays my fatigue and a feeling of being overwhelmed (fed by my hunger). He gets instantly irritated, and says "Forget about it. I won’t ask you for anything ever again. I’m always wrong, you always criticize me, I don’t want to talk about this anymore, forget I asked." Then he storms off.</span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;">He comes back downstairs after about 25 minutes and I attempt to give him a hug to start over. He rejects this and says he doesn’t want to hug me, doesn’t want to talk about this either. He is clearly still very angry. I ask if I just can explain to him why I reacted the way I did--reiterating again for what seems like the 9 millionth time my desire after a long day not to be hit with things to do just when I get home. Could he write a note to himself or me, wait until I’m settled, etc? He goes on to reply testily he always does things wrong, and then twirls his finger next to his head and says, "I have something wrong with my brain”-- meaning therefore he can’t remember to not tell me these things when I just get home. </span>(He regularly complains when I mention his memory issues, as he feels I exaggerate them. But here, he is using them as a reason why he can't do what I ask him to.) He is clearly very angry with me-- for how many things at this point?? </span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We have words about how he needs to make accommodations to his memory problems, and he responds he has made SO MANY accommodations...then three minutes later says he hasn’t made many accommodations when I say we both have had to make them, and will continue to need to do so. He goes back into, “I won’t ask you for anything, I don’t want you to do anything about this, I don’t want to talk about it, I don’t want to live with you. I do fine all by myself--it’s just when you come home. I don’t want to live with you anymore.” Final statement: “Will you just leave me alone?”</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Before the final “Leave me alone”, I attempt to get to what this was coming from, and his response is more about he always gets criticized, can’t do anything right, I can either let him live somewhere else or I “can love him”--when I ask what he means he mimics me in a hostile way and says, "Isn’t that why we’re still together, because you LOVE me??"</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">So I leave him alone the rest of the evening. I have fantasies about leaving him alone forever, letting him move somewhere else, as far away as possible. I am so very sick of these episodes. He doesn’t seem to remember all the times when I say thank you, when I tell him he’s done a good job at something, when I do things for him in an easy, relaxed way; when I come up with things for us to do together, when I have bent over backwards to not get reactive to his hostility, instead just skipping a minute or 5 and then starting again with pleasant talk and hope for the best.</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am so sick of this. SO sick of always having one more thing that needs to be done. (It took me until way after 9:30pm to accomplish the thing he had asked me to do earlier. Some nice end of the day. And I am the bad guy.)</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;">And so my angry heart mumbles to itself tonight: “Go away. Live somewhere else. Be happy or confused or burn the house down, I don’t care. </span><span style="letter-spacing: 0.0px; text-decoration: underline;">You </span><span style="letter-spacing: 0.0px;">leave </span><span style="letter-spacing: 0.0px; text-decoration: underline;">me</span><span style="letter-spacing: 0.0px;"> alone.” I will go to bed early. Try hard to let this go, so I can fall asleep and get some rest.</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px; min-height: 14.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><span style="letter-spacing: 0.0px;"></span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">And tomorrow, I will start all over again.</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-fD1ZQ6wVW_0/T112zCuJkWI/AAAAAAAAAEI/Lw2KK1pdnqc/s1600/IMG_4342_3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/-fD1ZQ6wVW_0/T112zCuJkWI/AAAAAAAAAEI/Lw2KK1pdnqc/s400/IMG_4342_3.jpeg" width="371" /></a></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div><div style="font: 12.0px Times; margin: 0.0px 0.0px 0.0px 0.0px;"><span style="letter-spacing: 0.0px;"><span class="Apple-style-span" style="font-size: small;"><br />
</span></span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com5tag:blogger.com,1999:blog-1708429237978897840.post-62274891740058552082012-03-04T00:33:00.000-05:002012-03-04T00:33:12.092-05:00respite: a dilemma<div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/--l-YFOPWmRw/T1LuXdISkGI/AAAAAAAAAEA/cR7KQxVIGKw/s1600/DSC08394_3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><img border="0" height="383" src="http://1.bp.blogspot.com/--l-YFOPWmRw/T1LuXdISkGI/AAAAAAAAAEA/cR7KQxVIGKw/s400/DSC08394_3.JPG" width="400" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I've just come home from a lovely week away. Time with my daughter and granddaughter that was so nurturing. And so healing. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Respite is essential. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Today, my first day back, I was able to do all the day-to-day maintenance I usually do, but with much more lightheartedness and energy. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am not sure how many more (if any) times I can go away and leave my hubby at home by himself for any sustained amount of time. It always involves leaning on friends; friends who are so kind to both of us, and so willing to help me to get time away. But it also always involves not a small amount of worry--will he get his meds regularly, and on time? Will he have a halfway decent diet (no matter how much I coordinate and cook ahead and write things down for him?) Will he have another 'incident' while I am gone? Will he be lonely? Vulnerable? Will he do something that, regardless of how benign it might be, will require days of undoing when I get home?</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I have worried about these things for years, but this time it seemed a little more like a Wile E. Coyote kind of thing. (You know, when Wile E runs right off a cliff, seeming not to realize it, then looks down and sees he is running in thin air, and plummets?) I have seen the day coming for awhile, and don't even know if it is here yet, when leaving hubby home by himself is no longer wise. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He has missed me this time, and has made no bones about it. In the past he has kind of defiantly maintained he is just fine without me and doesn't know what I am talking about when I ask if someone might look in on him from time to time. "It will be a pleasure to live life the way I want for awhile", etc., etc. "I might even go for a bus or train ride to the big city by myself while you are gone." I used to tremble at these last words, until my kids helped me to see that saying these things and being able to execute the plan were two very different things.</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He has always been insistent that he does not need anyone here to "watch" him or "take care of" him. He is a proud man, and a private one. He also can hold a grudge. Mostly at me. So insisting on a caretaker might ruin the delicate balance I carefully try to create--a balance between caregiving and providing him autonomy. I work hard to provide him with reasonable amounts of independence. There is so much he has lost already. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Yet, he has difficulty articulating things. He forgets many recent events. He drops or breaks things, can't remember how to work things. He can get confused, has even gotten lost once or twice a block away from the Main St. in the town we have lived in for 40 years. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">On the other hand, I know I need occasional time away to be able to sustain myself for the long run. I know that he needs to know he has the ability to take care of himself in some meaningful ways. Our kids live in other states. We live several hours away from his brother, and don't have other relatives nearby.</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I take time out for small amounts of respite regularly--time with women friends, time for photography, time once a week when he attends a formal respite program. Time like this for an hour or three is helpful, and I know I'd be lost without it. But time of a longer nature provides something different--a deep, deep rest. A time to breathe, to experience life as I used to know it--coming and going as I please. Time with others whom I love and gather energy from. Time with my small grandchildren--who require similar things of me, but who are growing, not declining. Time with loved and trusted and comforting others, who understand, who know how to give to me in meaningful (though small) ways, and with whom I can have interesting conversations, share ideas, and don't have to explain everything. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Time. Sustained time. <u>Enough</u> time.</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I know this is not a unique problem. Every caregiver has to figure it out. </span><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">But it isn't an easy thing to do. </span></span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I honestly believe, however, that respite is the key to endurance. </span> </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-size: large;"><br />
</span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com6tag:blogger.com,1999:blog-1708429237978897840.post-16850107154589408272012-02-22T23:05:00.000-05:002012-02-22T23:05:12.400-05:00a day in the life<div style="text-align: justify;"></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Very discombobulated (but rather typical) day. My beloved at his prime. I start to feel a little crazy around noon, so I escape with a friend for a little hike through the woods to find some calm for myself. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Returning home, I take my husband grocery shopping for his favorite supplies.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We experience the usual my-hubby-in-the-grocery-store scene. I keep hold of the cart to keep him from stopping, or going extremely slowly, losing me or wandering away. We make pretty good time, all things being relative. When we get to the far side of the store without incident, I'm feeling pretty good. (Probably thanks to my hiking time-out earlier, and </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">from the lack of any "incident" while shopping,</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Living with dementia makes the tiniest sweet things feel like big, happy deals.</span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">) I'm feeling so good that I let myself stop at an Easter display. I see some darling pink Easter bunny ears there that I am sure our granddaughter would love. I'm feeling so happy, I try them on to see if hubby will laugh. </span></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">On to the checkout. I spy my favorite checker, who is always great. Very droll. Very quick. Very sweet. Many shades of hair color, none of which are found in nature. She is a woman who has had her own experiences of being a caregiver to a loved one with dementia. She has told me so. I really like this woman.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">So we go to her checkout. Being the person that she is, she has finished with the person just before me, and is still chatting her up, big time. She doesn't even notice me as I unload my cart. I look forward to having her turn to me. She always has a smile and an amusing greeting.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I unload the cart. Hubby is behind me. All of a sudden I see him wandering off. I say my (frequent) little prayer that he knows where he is going and will not go too far. Still unloading. Suddenly, a woman comes from behind me and says to me with a concerned look, "There's a man on the floor over here". I look around, don't see hubby. Until I turn my eyes to the floor.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He has tripped over a stack of grocery baskets on a ridiculous little stand with huge wheels that rotate 360º. He has made a face plant on the floor, and when I turn to look at him, he is bleeding from his nose, all down his face, etc. Not a pretty sight. He is mortified, and therefore armed for bear at me. I ask, "What happened", and he says something quite snide. SO, since there are now plenty of people all around him ( a couple of bagger dudes, etc)., and since now there is a line behind me, and since my hovering over him when he is mad only escalates things, I go back to frantically unloading the cart, keeping my eye on him, but unloading, still. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">My checker has yelled, "There's a man down here!" and has left her station, calling someone over to finish our transaction. She goes to join hubby--gets right down with him and talks to him and uses her gentle humor. I know he is in good hands. Meantime the store manager wants to know what happened and if there is anything she can do, etc. I tell her to move those stupid baskets, that's what. They both ultimately walk him to a bench at the front of the store while I complete my transaction. The checker has him by the arm in the nursing-home-hold. She says she won't let go. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The blood is coming from an abrasion on his nose, and possibly he has a nose bleed. But he is not in too bad shape, just feeling horrible because of what happened. I know when he is in danger, but he is more surprised and humiliated than anything else right now.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I finish unloading my cart and checking out, but as I look at hubby and I look at the thing he tripped over and what a stupid place it was in (not to mention what a stupid thing it is), I start to get powered up. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">So while I am checking out, a bagging boy moves the basket holder to an equally ridiculous place in front of the next checker. I have some certain words with him and anyone else who will listen, like the store manager, who is back. I tell them that there are lots of older people who shop in this store, people who are not so nimble on their feet, may have vision problems, and this storage arrangement is just wrong. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am not yelling, I am not being unreasonable, but I am being assertive. I have taught Assertiveness Training. I know how to do this. They kind of say, "Yeah, yeah, Sorry," but they are not taking my assertiveness as seriously as I had expected them to. As seriously as most people do when I get like this (which is rarely).</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">By now my items are almost all checked out. I run my credit card through the thingie, and I am still kind of verbally spouting. Quietly--but feeling the force of the adrenaline. Wondering if hubby will still be mad at me when I join him.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">The replacement check-out lady is waiting. Waiting while I continue to fuss and fume. She then looks at me eye to eye and quietly says, "The ears." I say, "What?" --And she repeats, "The ears....I need the ears." </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I completely forgot. I had them on the whole time.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Do you get the picture? Unshaven dotty man bloodied on the floor. Crazed woman wearing bunny ears alternately unloading her cart and spouting off about the placement of grocery baskets in the aisle where anyone can trip on them. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">My husband is ok. He got a shiner out of it, which is a good conversation starter for him. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am fine, too, although if anyone took my picture as I was defending hubby while wearing bunny ears, we will be moving to another state.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-jDhuKPV8qQM/T0W5jzJ2G3I/AAAAAAAAAD4/ZQvrhI6VMTw/s1600/DSC08875-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-jDhuKPV8qQM/T0W5jzJ2G3I/AAAAAAAAAD4/ZQvrhI6VMTw/s400/DSC08875-1.jpg" width="400" /></a></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><br />
</div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com6tag:blogger.com,1999:blog-1708429237978897840.post-48187475681357686372012-02-18T17:53:00.000-05:002012-02-18T17:53:38.873-05:00found<div style="text-align: justify;"></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">....well, maybe in the (long) process of finding:</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">compassion</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">patience</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">resilience</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">self reliance</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">joy in solitude</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">trust in my 'gut' </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">boundaries</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">creativity for comfort</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">friends for whom flight is not an option</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">insight</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">patience</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">spiritual resources </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">nature's solace</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">photography</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">ability to distinguish fear from anger</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">healthy detachment</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">permission (from self) for respite</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">patience</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">fellow travelers</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">mindfulness</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">writing</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">more confidence in financial matters</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">letting go of past conflicts</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">ability to do household repairs</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">increased simplicity</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Olivia Hoblitzelle*</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">travel planning skills</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">a thicker skin</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">patience</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">selectivity with activities and people</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">'wants', not 'shoulds'</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">the "beginning again" possibility of each new day</span><br />
<br />
<br />
</div><div><br />
<h1 class="parseasinTitle " style="font-weight: normal; margin-bottom: 0px; margin-top: 0px;"><span id="btAsinTitle"><span class="Apple-style-span" style="color: #0b5394; font-family: Georgia, 'Times New Roman', serif; font-size: small;">*author of the book: </span></span></h1><h1 class="parseasinTitle " style="font-weight: normal; margin-bottom: 0px; margin-top: 0px;"><span class="Apple-style-span" style="color: #0b5394; font-family: Georgia, 'Times New Roman', serif; font-size: small;"><u>Ten Thousand Joys & Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's</u></span></h1></div><div><span id="btAsinTitle"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: x-small;"><u><br />
</u></span></span></div><div><span id="btAsinTitle"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: x-small;"><u><br />
</u></span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-uIN87P1hJzc/T0ApOq6_btI/AAAAAAAAADw/JWKhlH2BDK8/s1600/DSC00667_2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="395" src="http://4.bp.blogspot.com/-uIN87P1hJzc/T0ApOq6_btI/AAAAAAAAADw/JWKhlH2BDK8/s400/DSC00667_2.jpeg" width="400" /></a></div><div><span id="btAsinTitle"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: x-small;"><u><br />
</u></span></span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com0tag:blogger.com,1999:blog-1708429237978897840.post-26871463087958092642012-02-15T14:12:00.000-05:002012-02-18T23:18:41.170-05:00why it's lonely sometimes<div style="text-align: justify;"></div><div style="text-align: justify;"><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">journal entry from last fall:</span></i></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Late morning, and my husband puts on his sunglasses. He is puttering around in the dining room, then says, "I'm going for a walk." I ask him, "Is there anything you'd like to do today? It's such a beautiful day." He replies, "No, I don't think so, I can't think of anything. I'll just go for a walk." Tone: remote, formal, quiet. I say, "OK", and out he goes. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He comes back soon, saying, "I forgot my hat." I try again: "I'm thinking of going to Pineland Farms today. Where the old Pineland used to be." He replies, "Pineland Farms, I'd like to do that." I read a little to him from the website, and he says again "I'd be happy to go." So off we go. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He says nothing to me in the car that I don't initiate, so mostly we drive in silence. The drive takes about 1 hr. and 15 minutes in the country, full of fall color and light. We get there at around 2. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We drive around the old buildings, then stop at the visitor's center, hoping to get a map. I ask him at various times if he wants some cider, a smoothie, some tootsie rolls. "No thanks". "I ate breakfast this morning." "Tootsie rolls aren't good for my teeth." I buy some cider, but have no cash. He is standing with me in line, and I ask him to pay for it. He hands the bill to me instead of the cashier. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I ask him what he wants to see, and he says he wants to see the cows. He is walking about six paces behind me, in my 'blind spot" where I can't see him. He slows down when I slow down, so he doesn't advance much, and won't draw up to my side. We are walking slowly to begin with, and my slowing down practically brings him to a halt. He waits for me to begin walking again. (We have talked about this countless times-- this walking behavior never changes.)</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We drive to the cow barn, and go in. He quickly walks in one direction when I start taking photos of cows. I walk around the barn, snapping photos. I look up. He is standing not far from where we parted. Just looking. I ask him what he is looking at. Answer: "Cows." I make some comments, he replies monosylabically. I chat with the help about various cows. He asks them a few confusing questions that I can't remember now. The help can't quite figure out what he is asking. I ask him what he wants to do now, he says he wants to see the horses. We drive off. No comments from him as we drive through the grounds. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: center;"><a href="http://4.bp.blogspot.com/--8PXEauwMGs/Tzv_8hOMVDI/AAAAAAAAADQ/NSgia408r5Q/s1600/IMG_3279.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><img border="0" height="400" src="http://4.bp.blogspot.com/--8PXEauwMGs/Tzv_8hOMVDI/AAAAAAAAADQ/NSgia408r5Q/s400/IMG_3279.jpeg" width="361" /></span></a></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We find what looks like a horse barn, with two horses in a pasture. We stop. There are sheep here, mostly, it turns out. We watch a few outside from afar, then I say I am going to go into the barn. He follows me. They are letting groups of sheep out of the barn to the pasture to breed. At one point someone asks us to move to the other side of a chute. He stands still until I ask him to move, and I describe to him where to go to get to me. He does not look at me at all, so cannot see my body language. He instead just starts to walk out on the ramp that the sheep will use. I have to direct him out of the way of where the sheep are going. Of course he looks at me very angrily about this. At one point he asks the help, "Who teaches these sheep to sing?" This is humor on his part, not confusion. Everyone there laughs at his quick wit. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: center;"><a href="http://2.bp.blogspot.com/-75QNi89SFCA/Tzv_-C93x6I/AAAAAAAAADY/kdhMOXi7xJw/s1600/IMG_3298_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><img border="0" height="266" src="http://2.bp.blogspot.com/-75QNi89SFCA/Tzv_-C93x6I/AAAAAAAAADY/kdhMOXi7xJw/s400/IMG_3298_2.jpg" width="400" /></span></a></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Then we leave and drive to the equestrian center. We park, and there are some horses in fenced off pastures near the parking lot. We go over there, me leading, as usual. He stands there, looking. I take photos. Again, no conversation initiated by him. He comments monosylabically when I make remarks about the horses. I ask him does he want to see more horses, pointing to other pastures. He says no, he'll just stay there. I walk to some other pastures, I am gone maybe 10 minutes. When I come back, he is walking into the equestrian center. I ask what he's going to see. He says, "Nothing, I just want to get out of the sun." We go in, he just hangs back. I walk around, find a bathroom ask him if he wants to use one. He says no. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I keep looking around, and find a door to the stables. I ask him does he want to go there, he follows me again. No comments in the stables. He stands around in the middle of the barn. I ask him, after I take some photos, "What did you see?" Answer: "Horses". </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I have found a 'lovey' horsey--she likes to press her nose to my forehead. She and I are leaning into one another. He says, "Showoff." I say, "Who is a showoff?" He says, "That horse, rising up like that" -- referring to the horse I am with, who is just standing there. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: center;"><a href="http://3.bp.blogspot.com/-kf_4m25xVfQ/Tzv__Ubh-vI/AAAAAAAAADg/lqlIVvOKfR4/s1600/IMG_3323.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><img border="0" height="287" src="http://3.bp.blogspot.com/-kf_4m25xVfQ/Tzv__Ubh-vI/AAAAAAAAADg/lqlIVvOKfR4/s400/IMG_3323.jpg" width="400" /></span></a></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I ask him what does he want to do now. He says he is ready to go home but first he wants to wash his hands. I show him the bathroom. He can't turn off the faucet he has just turned on, asks me for help. In the car, he asks me, "Who owns these horses?" I read him something from a brochure, tell him what I know. "Hmm." he says. We drive back home. I turn off the road twice to take a few photos, he says "that's fine." NO conversation on the way home at all. We get in the driveway and as he gets out of the car he says, "Well, thanks for that idea. That was fun." </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He walks into the house and proceeds, at 4:30, to make something to eat, not asking me if I want anything. At first, not knowing what he is doing in the kitchen, I ask him if he is preparing a meal. He says yes. I say, which one. He replies, "the first one", and then corrects himself. "I had breakfast earlier. This is the second one." I ask if this is his dinner. He sounds irritated and says "Yes. Why do you ask?" I say I just want to know when I start to prepare dinner if I should make any for him. He says, "No, you don't have to make anything for me." </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">After he eats, he goes to the freezer, which usually means getting ice cream. I am in the living room, a half-wall away. He takes 10 minutes in the kitchen, first at the sink and then at the counter. Lots of activity, drawers closing, implements being used, put down, taken up again. I finally ask him if he is having some diffiiculty. He says very quickly, "No, it's done now, all done." and I hear the sound of the celophane coming off the ice cream container. I think it took him all that time to accomplish something he has been doing at least three times a week for years. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">He walks into the TV room with the container of ice cream. No more words. It's just 6 pm and he is done with his day.</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-nwOfS-wQ3RQ/TzwAAkCoUbI/AAAAAAAAADo/4rOIcDQZ4Go/s1600/IMG_3353.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><img border="0" height="400" src="http://3.bp.blogspot.com/-nwOfS-wQ3RQ/TzwAAkCoUbI/AAAAAAAAADo/4rOIcDQZ4Go/s400/IMG_3353.jpg" width="266" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I miss him every day. A lot.</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><br />
</div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com4tag:blogger.com,1999:blog-1708429237978897840.post-68899919020796162682012-02-13T20:17:00.000-05:002012-02-13T20:25:35.900-05:00having your own quest<div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">...a revision of a letter I once wrote to my friend and fellow caregiver, Kate:</span></i></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">One evening at my camera club meeting, three members who had recently been chosen to be in a juried show talked about their work. My favorite speaker was a man who passed on to us something his mentor had told him. He told us to look less for the "postcard image", and instead to seek out "precious light". "Take photos in that light," he said, "even if the photos are of a bubble gum wrapper on pavement. Get to know 'precious light' and how it works--until your response to it is automatic. You can then go back to looking for compositions. Your images will never be the same after that."</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Since then, I have been thinking about "precious light" and how I will know it. He assured us that we would know it if we set out to look for it, but I fear I won't be able to see it. One day, I suddenly remembered one of my favorite passages from Annie Dillard's "Pilgrim at Tinker Creek", in which she, too, talks about the importance of light. A paraphrase here, in which she encourages being aware of light: "You cannot cause light, but the least you can do is put yourself in its path".</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I'm mentioning this because I am thinking two things about these two pieces of advice. First, at this point in my life, it would be good to quest for photographic "precious light" if only to provide a focus outside the other concerns of the day--a worthy and absorbing distraction. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Caregiving is hard, hard work. It can consume you. </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Second, the advice strikes me as a good metaphor for all of one's life. I think that in order to endure, we caregivers need to remember our own need to pursue some kind of "precious light"--some place or activity or practice that bathes us with nurturing and renewal. </span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">We cannot neglect that and expect to remain whole.</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-_ANZPLchetI/Tzm3aPPgxPI/AAAAAAAAADI/VRgyCsRL4ng/s1600/watch2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="217" src="http://4.bp.blogspot.com/-_ANZPLchetI/Tzm3aPPgxPI/AAAAAAAAADI/VRgyCsRL4ng/s400/watch2.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com4tag:blogger.com,1999:blog-1708429237978897840.post-69887235983217813242012-02-10T16:58:00.000-05:002012-02-10T17:02:19.830-05:00a ceremony of losses*<div style="text-align: justify;"></div><div style="text-align: justify;"><span class="Apple-style-span" style="color: #351c75; font-family: Georgia, 'Times New Roman', serif; font-size: x-large;"><b>LOST:</b></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">balance eyesight comprehension </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">patience </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">glasses </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">joy </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">keys phone remote</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">travel in retirement driving ability sense of direction</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">crossword puzzles ability to tell analogue time </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">stamina wallet glasses</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">reading bike riding swimming</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">memory farmhouse freedom</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">glasses</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">ability to understand electronic gadgets</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">socks dialing a phone writing checks</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">talent in fixing or building wife's carefree spirit</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">electronic chargers playing sports shoes</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">magnifying glass hat gloves </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">spontaneous movement </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">glasses </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">vitality</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">confidence judgment </span><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">career </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">everyone's phone number self determination</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">distinction between freezer and refrigerator</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">horsing around with grandkids</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">cribbage backgammon independence </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">directions for everything (can't read them anyway)</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">speed hiking trust in own abilities</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">operation of thermostat, oven, dishwasher </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">fluency words story telling.....</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"> </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">...his remarkably quick and lively mind.</span></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/--bBJjHnqxEs/TzWLJf1enKI/AAAAAAAAACw/JJ_--VHLHgQ/s1600/IMG_3868.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://4.bp.blogspot.com/--bBJjHnqxEs/TzWLJf1enKI/AAAAAAAAACw/JJ_--VHLHgQ/s400/IMG_3868.jpeg" width="351" /></a></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><br />
</div><div style="text-align: center;">* Fragment of a sentence in the memoir, "Out the Window" by Donald Hall </div><div style="text-align: center;">in <u>The New Yorker</u> Jan 23, 2012</div><div style="text-align: justify;"><br />
</div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com6tag:blogger.com,1999:blog-1708429237978897840.post-57591376427147859582012-02-08T18:29:00.000-05:002012-02-09T18:07:13.707-05:00everlasting adaptation<div style="text-align: justify;"></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-4kSBQuvAan0/TzMDSLoi5WI/AAAAAAAAACo/RfK8SVhJWNk/s1600/IMG_3910_2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="333" src="http://1.bp.blogspot.com/-4kSBQuvAan0/TzMDSLoi5WI/AAAAAAAAACo/RfK8SVhJWNk/s400/IMG_3910_2.jpeg" width="400" /></a></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">A journey with dementia is a long, difficult series of adjustments to a new 'normal'. Just as the old saying goes, "Want to make God laugh? Start making plans", there is a truth about living with dementia that sounds something like, "Want to make sure something is going to change soon, and not for the better? Start thinking you've figured out how to deal with things as they are, and that life is now stable once more."</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">It's not an evil consequence of cocky assurance. It's just the way it seems to be. There always seems to be a new loss just around the corner. A new reality to figure out how to deal with. A new mourning. A new adaptation to make. This adapting eventually leads to a new 'normal'. Which, in turn, morphs into the next loss.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Sometimes the losses tumble into one another, stacking up before old crises have been resolved. Those are the really difficult times. Those are the times of fear and anger, panic--and thoughts of just running away.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">As dementia has made itself comfortable in our life, setting up housekeeping and leaving its socks on the floor, it seems that the losses and consequent need for adaptation come faster, and deeper. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">It sometimes frightens me when I begin to notice something which would have formerly sent me into a tailspin, and I respond to it with a kind of calm purposefulness that says, "OK, what do we have to do to learn to function in the presence of this?" Don't get me wrong, it is a far better place than days of frozen fear, feeling helpless, crying buckets and hiding in bed all day. But it feels as if I have lost some feeling, sometimes. Become numb. Can't locate emotions appropriate to the situation. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I am a counselor of over 40 years, so I 'know' some things that are nevertheless at times difficult to see in myself, or to apply to myself. I 'know' that the dementia dance is a marathon. I 'know' that a person can't function long-term in a place of panic and despair. I 'know' that for the most part, we humans eventually adapt to what is placed before us in life. I emphatically don't believe that things happen for a reason. I do, however, believe that what happens to us can most of the time be borne, although it almost always takes some growing and a lot of change. All that 'knowing', however, doesn't help the concern I sometimes have regarding my diminishing emotionality. I fear I might be losing something crucial to my central self. I wonder sometimes if it means I don't care. I wonder if I will continue to numb, until I can't feel anything anymore.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">My daughter once drew me into a new way of considering this necessary numbness. As I was off on a fear trip of losing touch with my feelings altogether, she asked me how I reacted to my grandchildren. Did I react with feeling in response to them--their actions, their growth, the sound of their voices, their very being? Thankfully, my answer was, "yes, yes, yes, and YES." Ok, thought I. Point well taken. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I still have my feelings. They are still there. But I guess I am learning to protect myself from the pain of dementia, because it is a necessary thing. It helps me to put one step in front of the other. Helps me to keep on keeping on, as the saying goes. Enables me to be a more loving, functioning presence in my husband's life, so that we can walk down this path together and he is not alone with his own fear and loss.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Don't get me wrong. I cried just yesterday while thinking about dementia and our losses. The difference is that my feelings are controlling me a little less as time goes on. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Where are you, or have you traveled, on this path? Do you, sometimes, worry about becoming numb?</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div style="text-align: justify;"><br />
</div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com6tag:blogger.com,1999:blog-1708429237978897840.post-56191923162400245572012-02-05T15:25:00.000-05:002012-02-05T15:29:10.284-05:00credibility<div style="text-align: justify;"></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">One of the most difficult and painful aspects of the dementia experience for me has been the frequency with which others' assessment of my husband's functioning is in deep contrast to my own. To put it succinctly, "He looks really great..." Or, "He doesn't seem confused to me." Or, "How can you think he has memory problems? We had a long conversation today and he seemed quite sharp to me." Or, "I haven't seen that in him."</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I've met these comments with deep ambivalence. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">On the one hand, I am delighted to learn that my husband has been able to have a normal interaction. That he was able to keep up, use his memory and intelligence and charm as he wants to and always has. That others are not embarrassed or wary of being in his company. This means he won't be isolated, because isolation is not good for anyone, and those with dementia are no exception.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">On the other hand, there has at times been deep pain in hearing these remarks, particularly when they come from loved and trusted people. I've worked hard to remind myself that they might well come from simple kindness--wanting to minimize or not call attention to those things they did see, but don't want to pain me by remarking on. Or it might come out of their own difficulty in acknowledging the decline of their dear friend or relative. These reactions are real to me--they mirror my own inner dialogue. I don't want to see what I notice, either. I don't want to accept those losses, the little deaths. So, we look for the positives. The things that are still there. And try to find joy in that. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">I believe that positivism is good. Very good. I spend a good portion of every day in a positive place. And yet....</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">And yet, there is a part of me that has needed very much (and still does) an affirmation of the things I see every day. Someone who will say, "I notice what you notice." "You are not making things up." "You can trust your observations." "How are you doing with this?" "It must be hard, do you want to talk about it?" </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Otherwise, I can feel more than a little crazy. I've doubted myself. Wondered if I am exaggerating. Felt I am being passively unkind to my husband. Felt guilty about being disloyal. (Disloyal is big.)</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">But mostly, crazy is what I have felt. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">As time has gone on and my husband's deficits have become more apparent, I feel less self doubt about my observations. I find some affirmation in what others notice. Time has taught me that what I witness when we are alone is real enough. How he is when he is with others is always the product of considerable energy on his part. He works so hard at normalcy. He can pull it off for short periods. Other people don't know that he goes home--or gets in the car--and falls asleep instantly. That it sometimes takes him days to 'recover' from being sharp for a sustained period of time.</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">No matter how much more difficult it is for him to hide his advancing losses, others are still several steps behind me in what they see. It's hard to get used to that. I battle the self doubt still. And the conflict between wanting him to show his best side, be connected and happy, and the real need to be affirmed in my experience of him--it's still there. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Thank goodness for the few people in my life who 'get' it. They have kept me from the funny farm. </span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div style="text-align: justify;"><br />
</div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><br />
</span></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-4hQ7a1tMTQQ/Ty7iiuL9hYI/AAAAAAAAACg/z9tMc3jZ4T0/s1600/chair.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;"><img border="0" height="320" src="http://1.bp.blogspot.com/-4hQ7a1tMTQQ/Ty7iiuL9hYI/AAAAAAAAACg/z9tMc3jZ4T0/s320/chair.jpg" width="312" /></span></a></div><div style="text-align: right;"><br />
</div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com4tag:blogger.com,1999:blog-1708429237978897840.post-86540261639834511092012-02-04T17:32:00.000-05:002012-02-09T16:01:46.978-05:00mystifrustication<div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">It took me all day to set this blog up, good people. I'm a bit fried as a result, but wanted to start with an initial post. What follows is an old entry from what I call my Dementia Diary, which I have been keeping on and off for years.</span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"> </span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I'm glad you stopped by, and I'm glad I finally put this together. I aim, as this post I hope demonstrates, to portray my ongoing experience with honesty, feeling and a bit of humor when appropriate. Here's an example from several years ago.</span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>"September 30 2008</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />
</span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Report from <span class="Apple-style-span" style="color: #cc0000;">Planet</span> <span class="Apple-style-span" style="color: #cc0000;">Braom Omkiru</span> </i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-height: 21px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br />
</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-height: 21px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>...fingers on keyboard. Right hand one letter off to the right. “<span class="Apple-style-span" style="color: #4c1130;">Brain Injury” becomes </span>"<span class="Apple-style-span" style="color: #cc0000;">Braom Omikru.</span>"</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-height: 21px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br />
</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>A perfect metaphor for what it is like to live with Brain Injury--signals scrambled, things don’t look right, best intentions go awry. Mystification and frustration balled into one. Mystifrustication. </i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-height: 21px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br />
</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>I’d write more but after a 13 hour day with only a one hour quiet time, I want to go to bed. More detail next time.</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; min-height: 21px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br />
</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>sincerely,</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i><br />
</i></span></div><div style="font: normal normal normal 18px/normal Rockwell; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: justify;"><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><i>Ms Tifrustication"</i></span></div>waning lighthttp://www.blogger.com/profile/16155097793329305703noreply@blogger.com2