My mother, five months later

Some of you may remember that my ninety-one-year-old mother had a stroke in late July.

How's she doing now? Fair. It's been a long, long five months.

In the beginning, she was able to move her left leg only a few inches--and very laboriously, at that. Her left arm could move better, but it was wildly uncoordinated. Asked to touch her nose with her index finger, she'd slowly and shakily approach the general region of her head; but her finger was far more likely to encounter an ear or her hair than the requested destination. When moving in any way--doing what are called "transfers," from bed to wheelchair, for example--she had to be helped with what I believe is called a "two-person full assist." That is, she was more or less limp, and two people had to support her weight.

It was dreadful for me to watch, still more dreadful for her to experience. And, although her speech was mercifully almost fully intact (only a slight increase in word-retrieval problems, but nothing out of the ordinary, really, for a person of her age), her memory wasn't so hot. And she was scared.

It wasn't always easy to tell if the memory problems were from the stroke itself, or from the overwhelming experience of having had it, and the resultant anxiety she felt about herself and her future. She was none too hopeful about that.

Never an optimist, she'd claim she couldn't use her arm at all, when clearly she could. A constant litany was the fact that she'd always need 24-hour a day care, for the rest of her life. I couldn't put a dent in this idea; if I even spoke of other possibilities, she'd become annoyed.

I know my mother better than to think pep talks would help--not that I didn't try, but the look she gave me would shut me up pretty quickly. The forced heartiness of the physical therapists and their constant, "You're doing so well!" would call forth eye-rolling and sarcasm worthy of a teenager from her.

Pretty early on I decided to give up on my mother's having a positive attitude--the main thing was to just get her to do it--whatever the "it" might be at the moment. For example, when she was in the rehab facility, she developed the habit of telling the physical therapists she didn't feel up to her exercises right now and to come back later. The therapists informed me that, if she declined too many days in a row, Medicare would stop paying for rehab and she'd be out on her ear and in a nursing home, utterly dependent. Knowing my mother, I decided to tell her. Her reaction? "Okay then, I'll cooperate."

And cooperate she did. Within weeks she was taking a few tentative steps with a walker. It was astoundingly gratifying to see her, almost as strange as if she'd mastered some rare and complex form of gymnastics. Her arm recovery was even more dramatic than her leg. I watched her persevere and put styrofoam pegs into a styrofoam board--it looked hard, requiring not only fine motor coordination, but force as well, and she seemed miserable. But she did it.

My mother's recuperative powers were starting to take hold almost in spite of herself. Although her attitude problem remained, it turned out that some of the staff really enjoyed her sarcasm and her refusal to sugarcoat the situation. By the time she left the place, after two long months, she had many friends who were going to miss her.

And she could walk with a walker, although only for about ten feet before tiring. Her arm was almost normal (although she still said it "didn't work"). As for transfers, she could do them herself, with someone standing near to cue her and remind her how it went, and to support her if she seemed wobbly.

The progress was immense, but there was a problem: she had a sort of amnesia for the events of the first few weeks after the stroke. And why would that be a problem? After all, who'd want to remember such helplessness and hopelessness? Well, it meant she couldn't evaluate the astounding progress she'd made. All she knew was that she still couldn't walk right; she didn't remember that at the beginning she couldn't even consider the concept of walking, much less do it.

Now she's been home--"home" being a lovely apartment in an independent living facility--for almost three months. She's progressed from 24-hour attendants (the situation she insisted she'd need for the rest of her life) to 8-10 hours a day, lessened at her own request. At a certain point, she'd confided in me that they were getting on her nerves, and she could do without them at night and a few hours during the day. Now she's almost careless about her transfers, even letting go of the walker on occasion as she performs them, balancing for a few seconds in the way she used to so long long ago, before the stroke: on her own two legs.

Every single thing is getting better, including her memory. She still can't get all the way to the elevator under her own power, and so she's wheeled down to activities and meals. But I have every hope that some day, probably within the next six months or so, she may indeed graduate to doing so on her own, and to only having help for perhaps an hour in the morning and then again in the evening.

Lately, I took over her checkwriting and financial record-keeping. It's not that she can't do both things--it's just that they caused her so much anxiety and worry that it was making us both crazy. And why all the anxiety about that? She is fortunate to have home health care insurance, but the balky insurance company has caused a cash flow problem that has increased her stress so much that it was affecting her health itself--not to mention my own psyche. The insurance company--ah, the insurance company! Two and a half months, and they have yet to make a payment--

But lately there's been a remarkable change in my mother. Both my brother and I have noticed it. There's a certain lightness in her voice, a lilt that means she's happier. When I call her now and ask how she is, she ordinarily says "Pretty good." She's reading, or going downstairs to an activity like a concert or a lecture, playing cards again. The caretakers have finally shaken down from a bewildering host of strangers who came and went with no pattern, hardly even staying long enough to allow her to learn their names, to just a few whom she likes and who like her.

And they really do like her. My mother is an intelligent and outspoken woman who, even now, exudes a sort of life force, an energy that comes across as much younger than her years. Her main caretaker seems to know exactly what to do, devising strategies to entice my mother to walk longer distances in the halls, getting her soup when she doesn't feel too well but making sure it's low-sodium soup, staying late one time when the next caregiver didn't show up to relieve her. Even my mother, who earlier on didn't have much praise for anyone she encountered (the best was usually, "She's OK, I guess"), phoned the agency to let them know how wonderful this particular caretaker is.

I can't praise these women (they are all women) highly enough. It often seems to me to be a thankless job. And it's true that it's a frustrating, low-paying, high-stress, sometimes infuriating (and even revolting) position. But the rewards must come from seeing the gratefulness of someone like my mother, someone who clearly doesn't give out those sorts of kudos lightly. In seeing the slow but palpable progress that is possible even in a woman of ninety-one (a few weeks short of ninety-two, in fact).

Just five months ago my mother left the land of lifelong robust health and entered the terra incognita of illness and disability--and it was a terra that held, for her, a great deal of terror. I'm not saying that at this point she's happy to be there; not by a long shot. But the terror has diminished. And now, when I remind her of all the progress she's made, she doesn't wave her hand and dismiss me anymore, or roll her eyes--she agrees.