Living With Lewis

My husband, Flip, is losing ground fast. Every day he becomes a little less himself as his own body turns on him, but there are no weapons to defeat an enemy like Alzheimer's Dementia. He complains that something inside of him is saying "fuck you" to him all the time.

In the earlier stages when he was still more lucid, he named his disease "Lewis" because, he said, "It's good to have someone to blame." Flashes of his old humor take me by surprise now but remind me that he is still in there, still aware and angry and frustrated. At some point he will lose even this awareness. I don't know if that will be better or worse. I strive to ease his life while he still knows who I am, to fill him with my love so that when he is adrift on an ocean of confusion, he will still feel the warmth of it. Too often, I fail miserably. Lewis makes deep inroads every day and takes more of Flip away from me, and from himself.

Well-meaning people tell me that I must take care of myself and while I am grateful for the solicitude, with all respect they don't know what they are talking about. They earnestly remind me that if I do not I won't be able to take care of Flip, but the plain reality is that my needs do come second now. This disease has changed everything including the dynamics of our relationship. Sometimes the only thing that keeps me going is my absolute certainty that if I were the one Alzheimer's had chosen, he would do the same for me. He is probably a better person than I am.

Flip was once a highly articulate man who now struggles to express the simplest thought, and often gives up or simply forgets what he wanted to say. He was a professional musician who could play guitar, bass and drums better than most people. He was also a graphic designer, a talented photographer, and an avid bicycle rider. Now he is nursing injuries from his latest fall last week, lacerations and painful rib bruises.

I took his Bianchi to the bike shop for repairs. "You should see the other guy," I said. They have seen us often in the last year and didn't even charge me this time. Of course I wonder if Flip should still be riding since he now falls a lot, but as long as he wants to I can't see taking that away from him, too. He has already lost so much. He says that he feels free of Alzheimer's only when riding his bike. He wears a helmet to protect his brain even as it abandons him.

His mind now works in strange ways which seem illogical to me because I am still operating on the old brain model. Alzheimer's has its own logic as the amyloid plaques and tangles which characterize it struggle to perform tasks he has forgotten how to do. He has become a black hole into which every possible household item disappears. Almost nothing remains in its assigned place and it often feels that I am living in a world invented by Lewis Carroll or Franz Kafka. While cooking, I will reach for an implement only to find that it is not where I have always kept it; in fact, it is nowhere at all. Right before Thanksgiving, I noticed that an entire shelf of glassware had disappeared. Flip tries to keep busy by "helping" but his sense of spatial relations is greatly impaired. I suspect he couldn't figure out where to put the glasses, so he threw them away. This was my wake-up call to hide anything of value, which is a good idea in theory but not always possible. We live in small quarters and he has access to more of it than I do since he is over a foot taller.

In our former life, Flip and I spent seven years renovating an old house ourselves. He replaced wood flooring, rehung the crooked front door, plastered giant holes in the walls that had been concealed with ugly paneling which we removed, rewired the electricity and installed new copper plumbing, tiled the bathrooms, made structural improvements, replaced the chimney, painted everything inside and out and did extensive landscaping. The only thing we had done by professionals was a new roof which required removal of three former roofs, one on top of another. We turned an ungainly, plain house into a beautiful one with lovely grounds and sold it to move to California, where we live in an apartment.

We still have several huge toolboxes, but Flip is no longer able to hang a picture or replace a light fixture after changing a bulb. He has difficulty dressing himself although he usually refuses my help, and coat hangers bewilder him. He naps frequently, which his doctor says is because it takes so much effort to do anything when one has Alzheimer's. He is still unfailingly kind and generous, and the sweetest man I have ever known.

We belong to a support group for people with dementia and their caregivers run by the Alzheimer's Association. They divide us into two groups which meet in adjoining rooms and we are both fond of the people we see there. But sometimes we don't go because everything seems so futile. I am sure that passengers on the Titanic who had someone's hand to hold derived a measure of comfort from it, but the ship still went down.

I try to keep him entertained or at least engaged by planning small excursions, even if just buying a latte in a different neighborhood. I am now our only driver but we also do a lot of walking. San Francisco is a wonderful city to explore on foot because there is always something new to see, which is good because we are not able to travel the world as we have both always wanted to do. Alzheimer's has made our life much smaller. I try to see the lessons in that, and the opportunities for spiritual growth. Sometimes I feel angry, but anger in a vacuum is really a waste of energy which I badly need for our survival.

I worry about what will happen to Flip if I die first. This is a real possibility as I am older than he, but on the other hand, women tend to live longer and I am healthy. Alzheimer's has leveled the playing field so that it is anybody's guess which of us will go first. We have no plan in place for the future because I allow myself this small shred of denial.

This devastating disease is becoming epidemic as the Baby Boomers age. Those who study it say that they are seeing more and more cases of the early-onset variety. Flip is among the earliest as he was diagnosed at age 50, but in retrospect had problems for several years before. Alzheimer's is an equal-opportunity disease. It seemingly strikes people at random like an evil lottery. At present there is no way to determine who will get it, or why. Lifestyle seems to have little effect, nor is there any other reliable predictor. We know that smoking is more likely to cause lung cancer than not smoking, but there is no comparable preventive behavior associated with Alzheimer's. You are either lucky or unlucky. It does not operate by half-measures and takes no prisoners.

This is a most isolating disease. My family of origin, although wonderful, is only sporadically in my life while Flip's siblings and friends, even the ones who were supposed to be forever, have drifted away. It's disappointing but I don't blame them. They are dealing with their own concerns, and I think that when people don't know what to say they try to avoid the awkwardness by saying nothing. But it's lonely with only the three of us: Flip, me, and Lewis. Especially Lewis, who has become the most powerful presence in our lives.

Flip has asked me why him. I told him that the gods must have known that he could handle it better than I, and sometimes I even believe this myself. I cannot imagine being unable to form a sentence, or to read, or in effect to trust my own mind and body at all, without having an ongoing epic meltdown a permanent existential crisis. Knowing this makes me grateful for the small things in life, the things I always took for granted. Alzheimer's is the best reason I know for living in the present. I have learned that every day is its own holiday and should be celebrated, that while planning for the future is always a good idea, ones life can change in a heartbeat. No matter how intricately detailed our illusions, we are always flying blind. And perhaps this is a good thing because it keeps us sharp.

I think of Rudyard Kipling's famous poem, "If" which begins:

"If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;"

I substitute "Flip" for Kipling's "all men" and am mindful that I must be strong for both of us as I am increasingly called upon to keep my head while he is losing his, that even as he doubts me, I am by default the one in charge. Even though I would rather not be. And I must learn to trust myself more.

I try to live in the moment. I strive to honor and enjoy my husband as he is today while trying not to compare him to the man he was yesterday. I do this because I know that tomorrow he will no longer be the man he is today. But he is in all these aspects infinitely precious to me, and we will get through this challenge because we have no choice. And because life is always worth fighting for, even when defeat seems assured. The important thing is not to give up, ever, because a cure could be found tomorrow. And that hope makes today a bit sweeter.