A change in perspective

Something has happened inside.  An altered perspective that suggests that my focus might need to change.  

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.  

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, 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.

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.

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.  Having finished a round of antibiotics, A. is cognitively improved, but not to where he was before he got sick.  I have observed many times that once you see a new behavior or decline in cognition, it may come and go for awhile but over time  it becomes permanent.  To think of last week's picture as ever being what happens 'normally' just makes my heart break for both of us.

So, A. has climbed out of last week's hole, but 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. 

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.  The companion to a person of limited awareness.  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 occasionally 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.

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 I 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.   

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.

Weekends.  Last week it was a three day 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'.  

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.

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 my 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.

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.  

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.   

a day in the life...

A. requires a good deal of care.   Aside from our time sitting with one another talking, watching tv, or going somewhere in the car, here is a day's worth of our interactions.  

I go upstairs when I hear him stir.  (I now use a baby monitor, so 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.  

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 may have used the bathroom myself, may 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.)

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.  

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.   

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.    

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.  

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.

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 and to the bank on the same day, maybe to the pharmacy and 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.

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.

Tomorrow I will post how this routine of ours lately has affected my thoughts about my life and where it is going

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