As his wife’s caregiver during her losing battle with early-onset dementia, author Stephen Lewis, wrote a blog that became this book, Dementia: A Love Story.
Read an excerpt from Dementia: A Love Story below.
It’s either cool or cold today according to your frame of mind. I won’t choose. It is somewhere in between. No sun and a steady drizzling rain that might develop into something more significant. Reports of street flooding in town, but no danger of that here, sitting as we do atop a hill. A new physical therapist will be here soon to do an evaluation to determine if she will undertake another round. The goal will be more modest than in past therapeutic efforts. This time we are looking to get Carol back on her feet, literally. Resuming walking may be beyond the range of possible outcomes.
I am also aware that part of the need for an evaluation at this juncture is to project the benefits of the therapy so as to convince insurance to pay for it.
In any event, I am snatching a little writing time now, sitting across from Carol in our living room. After being quite talkative—although I cannot say about what—she is about to start her afternoon drowse.
A realization has occurred to me. As I write, I find myself expressing myself, on occasion, in a light-hearted manner that is most definitely at odds with our situation. This should not surprise me. I have always during life’s dark moments sought a little humor to lift the gloom. Doing so is not a conscious decision. It is how I am wired.
If I try to analyze myself to explain myself to myself, I recall hearing somewhere a handwriting expert suggest that an individual’s basic personality can be revealed in the strokes of pen or pencil. Even as I write that I wonder if this kind of expertise is becoming a quaint relic as more and more people only tap out their thoughts on a keyboard rather than inscribe them on paper.
Be that as it may, we still sign things like credit card receipts, and perhaps that will continue to provide a sufficient basis for what that long-ago expert had to say. What has remained in my memory was the assertion that if the handwriting literally had an upward tilt to it, it reflects a core optimism. My handwriting, as miserable as it is, has such a tilt, most noticeable in how I cross the t in my name. I do so with a longer line than is necessary and with a strong upward tilt from left to right. I even feel a bit of a rush of energy when I make that line, which I do after I have scrawled the other letters of my name.
So it would appear, if that expert’s ideas have any validity, that I have a solid core of optimism in my emotional makeup.
I feel that is correct.
I also know that optimism seems totally out of place in our current situation. On the one hand, it is. On the other, an irrational optimism stiffens my resistance to yielding to this awful disease.
It will defeat us. I know that. But not without one hell of a fight.
And on some level, I believe Carol shares that determination. She was never deterred from going after anything she wanted or to lose what she had.
I do think that even now, on some level, that strength of purpose remains.
She does not want to give in.
Settled into my writing chair in the living room across from Carol sleeping on the sofa. Usually, she does not fall asleep as early or soundly as she has done tonight. I think she was knocked out by the session with the physical and occupational therapists this morning.
I did my grocery shopping this afternoon and needed a rest before making supper for us. On shopping days it’s always frozen dinners. Carol’s is lasagna and she eats it with a good appetite. For me, a Hungry-Man dinner.
Dog is knocked out also, but that is normal.
Today Carol worked with her third physical therapist as well as her third occupational therapist.
I thought we had moved beyond the reach of both kinds of therapy. We had started with occupational therapy a couple of years ago shortly after Carol’s treatment for breast cancer was completed. At that time, we were working on her restoring her handwriting, which had been a thing of pride and beauty. But after chemo, she could not manage to write on a straight line or start at the left margin.
In my ignorance then, I thought this problem could be, and would be, fixed.
Of course, the problem only got worse. We moved on to the first physical therapist, who concentrated on exercises to strengthen her trunk. When that therapist thought she had done what she could, she left us with a sheet showing how to do each of the exercises, along with a pedal device with which Carol was to continue strengthening her legs.
More or less at the same time, we worked with the second occupational therapist with the goal of restoring Carol’s skill on the keyboard. She had been an excellent typist.
I thought, naively, that muscle memory would kick in and fingers would again find the keys as they used to.
Of course, that didn’t happen, any more than the piano lessons we signed up for restored her ability on that kind of keyboard.
When her mobility difficulties worsened, we worked with the second physical therapist, with the goal of getting her able to go up the stairs.
I’ve written about that failed effort.
I did not see much point in continuing to work with either variety of therapy.
But our nurse practitioner, observing Carol’s inability to get off the couch and recognizing that she was more than strong enough so to do, suggested we try yet again. I agreed, so the third physical therapist came last week and asked if she could return with an occupational therapist to see if the two could combine their efforts.
That is what happened today.
With a degree of success.
They managed to get Carol on her feet, and then also into her travel chair for a little movement around the house.
These feats were accomplished in spite of Carol’s spirited, and occasionally profane, resistance.
As I witness their working with Carol, I felt a little stirring of hope.
Maybe, just maybe, in spite of the heavy weight of the downward movement of the disease, that movement could be stayed, and even to a small, but not insignificant degree, reversed.
A great success would be to get Carol back on her feet. Perhaps even to walk a little.
Is that too much to hope for?
My core optimism answers, in spite of all evidence to the contrary, in the affirmative.
Excerpted from Dementia: A Love Story by Stephen Lewis. Available in bookstores everywhere. Published by Mission Point Press.