Thursday, October 17, 2013

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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