“It’s really important that you understand, or maybe a better word is ‘accept’, that your wife is not the woman you married years ago,” a friend of mine once told me. This was in the early stages of my wife’s dementia, and I clung to that thought as the disease progressed.
Physically, my wife is pretty much the same woman I married. There are few more inches on her waistline, some maturing wrinkles among other facets of aging, but these changes are largely inconsequential. And I can live with her loss of memory, which is sometimes dramatic, but the accompanying lack of empathy strikes deep into my heart.
Before her illness, she projected a warmth and understanding of both herself and those she interacted with. Now she sees her world largely as an extension of her own needs and desires; and that makes my job as her caretaker extremely demanding.
I don’t take her actions personally, I tell friends. But, in fact, I do. Understanding that her callous unfeeling actions are a function of her illness, not a conscious choice, helps. But sometimes it’s hard.
Living with a Trying Person
I remember riding a tour bus with her one day sitting across from a somewhat overweight couple. My wife fixated on their girth and angrily said: “You people are really fat. You need to go on a diet”. The couple was shocked and mystified at her socially inappropriate outburst, as was I.
I asked her later how she would feel in their place. Her response was that they needed to be told that they were fat and their feelings were irrelevant.
Another time, I watched my wife grow impatient with a piece of cream cake that wasn’t defrosting. So she started to microwave it – not a good idea. When we got into a shouting match about how to thaw the cake, I suggested we cut it in half. She could microwave hers. I would let mine sit. She then declared that she was going to eat both portions.
“But we usually share,” I said.
“Forget it. I’m going to have both pieces because I want the whole thing,” she said.
I know. These are little things. But the small things pile up when you are the caretaker for a person with dementia. They undermine years of wonderful memories of being together. You realize you are living with a person you otherwise would have little to do with. My wife these days is often inappropriate, uncooperative and unpredictable. But I love her. I’m committed to her. We share a history that has defined both our identities, and I feel a moral responsibility to take care of her.
Searching The Internet
To better comprehend my wife’s odd behavior I began searching the Internet. As my exploration progressed, I realized I was also in pursuit of a way to somehow gain control (however illusory) over her disease by finding labels and research studies that would ease the stressful present––and the uncertain, disquieting future.
What I found were a large number of medical definitions supplemented by some nurses’ accounts and discussions among family caretakers on techniques to deal with the disease on a day-to-day basis. (Not surprisingly there were virtually no accounts from the ill person’s standpoint.) Nowhere did I find a discussion of the frustration, anger and resentment caregivers sometimes feel, or ways to handle it.
Dementia on TV
On television, commercials for dementia medication usually show a loving daughter deeply engaged with a psychologically absent mother, or an aging grandfather surrounded by the laughter of his grandchildren. But that’s not the way it usually goes. At the risk of being viewed as not “suffering in silence,” I’m telling you that it’s hard. In those interminable hours when it’s just you and her alone in the house you built together, sometimes you just want to escape.
The little contractual agreements you made as a young couple no longer hold: “I’ll wash the dishes if you take care of the dirty pots and pans” or “I’ll go to work if you stay home and provide the emotional support I need to feel anchored in the world” have no place in the real world terms of dementia.
Gone But Not Gone
For me and my immediate family, the person we knew as a wife and mother is no longer with us. It does no good to say, “This is not the person I married.” This is the person we have living amongst us.
There are brief moments when my wife returns to be the woman I’ve lived with for so many years. When she’ll surprisingly remembers some important, joyful past situation where we felt very close, when we can relate as a couple once more. There are also those moments when I tell friends about my wife’s behaviors and they become, in the retelling, funny.
For instance, we were in Buenos Aires, a city where English is not widely spoken, and I recall my wife angrily telling a scruffy cab driver, “You know your hair is filthy. Why don’t you wash it?” He professed that he did not understand. “No comprende,” he said. But she was right.
As her dementia worsens, I cherish those moments when the woman that I love comes back to me. But I know that dementia will only get worse. And when she is no longer accessible, where will I be? Will I ever be able to love again?