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The passivity situation gets to me sometimes , and I  worry if I plan out the day, I’m setting myself up for accusations of being bossy, but if I don’t do or plan anything, she will continually say “What can I do?”, or else just sit, or pace around, sighing.  I learned in a short course on caregiving for dementia that a good day is one where you avoid major meltdowns and the person is contentedly involved in her life some/ much of the time. Sounded refreshingly simple, at first. But now I find that as her initiative diminishes, the need for a steady supply of ideas is growing.

Some things are pretty normal, still – she can:

Walk up to the road and back, 20 minutes at most. This she can do herself, but I keep her company some of the time. She does this two or three times a day. So far, she is oriented to place, at least around home.

Go get the mail – the mailboxes are two houses down from us. Ditto the trash receptacle and the recycling station. Each of these trips  can be done once a day at most.

Unload the dishwasher – every other day at most, unless we have company.

Used to be walk the dog, but no more dog since last summer. A mixed blessing, the dog was good company, but barked a lot and was also a lot of work. Sometimes I wonder about getting another dog, or a cat…but then I would have two beings to watch over, and following me around….

Make the bed, tidy the bedroom – a few minutes in the morning.

Fix her own breakfast and lunch, and once in a while, make part or all of dinner.

Practice and play the recorder – and, thankfully, still willing to meet with her old recorder group once a month. (And, the recorder group seems willing to meet with her!). Gets frustrated, but sounds pretty good still, to me.

Take a shower and manage her own grooming.

For all the things she can still do, I am very grateful.

What Can No Longer Be Done:

Can’t watch tv on her own –  the remotes are too complicated, and even if it were all on one remote, you have to understand something of what it is you’re trying to do. Netflix can mean DVD player, or the Roku device, for instance, snd trying to explain this effectively has not worked. She can no longer follow the written instructions that worked for some years for her, or, perhaps its that it gets frustrating for her to try to follow instructions, and she has a much lower tolerance for frustration now.

Can’t hop in the car and go do an errand. No longer drives. Has not taken to the idea of a cab, and could not do this on her own at this point. Might  not remember how to get back by calling the cab, or by looking for it after the errand was done.

Can’t use the computer – can still read email, but even then gets frustrated if she encounters any problem at all, and the computer is old, so problems come up anyway. Cannot just “look something up on the internet” without getting confused.

Can’t easily call a friend – can place a call, but mostly just worries and obsesses about placing calls to friends. If she does call, forgets she talked to them. Has lost the sense of how long ago we saw people, so will ask about people we had for dinner last week as if we hadn’t seen them in months.

Can’t work in garden – her back is not good, nor balance, so I have not been encouraging her to weed or plant. This was a big hobby for most of her adult life, and is a big loss. If she uses a stool to sit on, she still reaches for weeds in such a way that it is a strain on the back, or gets up from the stool and works from a standing position without thinking.

Those are just examples of things that might have occupied her time in past years, and given the day structure and meaning. But it is more and more up to me to think how the day might go, incorporate activities she can participate in, monitor both our energy levels and try to determine what will make for a satisfactory day.

Fortunately, the books and the blogs have been providing ideas, as well as support group members and other friends and family. This summer and fall will be the time to really work up some new ideas.

One thought on “Initiative

  1. This is a helpful description of both what losses J is incurring and the reality of what changes you are trying to accommodate. It is so useful when you share details like this, as it reveals what I can’t know as an outsider. Thanks so much for writing about this part of your life.


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