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

.

to friends and family of people with dementia

You probably wouldn't be visiting this site if you weren't in some way touched by someone with dementia.  

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.  

You wonder how you can be helpful.  And at 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.  

If you are being really introspective and honest, the idea of dementia scares you silly.

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.

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.)  

Mostly we are just trying to get through another day.

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.

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.  

Try to avoid filling the time with tales of your last trip, cultural adventure, romantic date, new house or couple's project.  We are happy for your freedom and your vivid connection to life.  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.  

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 for a time to people we love and miss.

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. 

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.

Don't ever imagine you have nothing to give.

Connection.  Presence.  Showing up.  Laughter.  Diversion.  Friendship.  If you have been close to either one of us, this is what our time together consisted of before dementia.  See, you do know how to do this.  By heart.

   

at the store

There is no winning for either of us at the store.  

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.

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.

I also think he gets way overstimulated with lights and displays and people.  This adds to his confusion and further slows him down.

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.  

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.

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.

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.

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.  

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.

Anyone else experienced the "at the store crazies”?  Did you find a solution??  

or....Does anyone know how to start fresh in Oklahoma?

;o)

Pause

 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.


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.


Amidst myriad chores, obligations, and countless caregiving duties, here is our beautiful, peaceful world inviting me to slow down and participate.


Quiet, Mike.  Breathe.


All the rest will be here tomorrow.  But this here, this is NOW.  


This is what I need.

Weeding the garden

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 (three weeks tardy for this month, but all caught up and recorded through next month.  Enormous relief.)

Yet I lingered in bed on this beautiful morning, as I usually do.    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 Books 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.  


Then went out to A'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 the 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.  


This is painful for both of us--it has brought each of us to tears many times.   


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.  It is certain this garden has not been weeded in at least two years.  


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."  


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.  


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.


I came inside about a half hour later and found him sound asleep in his chair.

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.  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.  


My free day for creativity was shot.  Not wanting to face all those further interruptions, I just lay in bed, awake.  Trying to capture some peace, if not creativity, in the day.


This is how I spend my life. Doing the best I can to 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.  


I miss my husband, my partner, MY helper and supporter.  He has gone away.  For good.  


...and left me alone  with this often-helpless man-child to love and to find a way to cherish.


amen

tired

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 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.  


How am I to maintain any semblance of serenity when he seems so unbelievably aggravating on an ongoing basis?  


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. Lately 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.


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."


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.   


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.


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 reliably will contradict himself in a matter of minutes.  


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.


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 I 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.  


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.