The Alzheimer’s world is a parallel universe: the patient and the caregiver, the one who forgets and the one who is forgotten, the one whose memories recede, the one for whom those memories become even more important.
Ours is a second marriage, for both. Given that I was 50 when we exchanged vows, the chances of our celebrating our fiftieth wedding anniversary were few. So, we decided that we would live fifty years in the years we had. At the outset, we both had work that sometimes meant travel. On those occasions we were apart. But, except for that, we lived a life of togetherness.
We embraced each other’s interests. I took up fly-fishing and developed sea legs for long weeks on a ketch on the coast of Maine. He found himself hosting a very different group around the dinner table, going to cabaret and theater openings. This was a marriage of true intimacy.
As a result, spending all my time with my husband after the diagnosis of dementia/Alzheimer’s was an easy segue. A reality check of things he could no longer do made it clear that I would have to take on extra family responsibilities and that we would need to develop a different pattern for our daily lives. Some things stayed the same. Friends came to dinner. He would have an occasional lunch with one of the young men he had mentored. I would deliver him, go to lunch with a female friend and then pick him up. His participation in their conversation was very limited but he clearly enjoyed being with these special young men.
He was still physically strong, could walk a couple of city blocks using a cane, and we would go out to lunch together once or twice a week. We went to restaurants where we were known, where we could sit beside each other. We would both enjoy the restaurant scene, admire the girls, note the fashions, hold hands, and, once, he put his arms around me and danced me out the door, to the applause of all the waiters.
For the first two years after hearing that dreadful word, Alzheimer’s, I was the seven day, twenty four hour watchful wife/caregiver. During this time, we moved from a fairly normal routine to what I think of as the “prompt” months. He would wake up in the morning and before he even got out of bed would ask, “What should I be doing? Should I be doing something?’ Prompted, he would get up for breakfast; prompted he could shower and shave himself; prompted he could dress. Then we moved to another stage where, even prompted, he could not do those things himself. Wife became the valet. I would tease him that I now had my very own Ken doll. And he would laugh with me.
Others could see the changes in him more clearly than I could. And I began to hear a chorus of voices – family and friends — warning me that things would get worse, that I would not be able to manage on my own, that I should be thinking ahead, making a decision between home care or nursing home, telling me that I needed to get away, take a break, have respite from the caregiving role. Eventually, I would face those decisions, I would decide on home care and not a nursing home, and I would recognize the need to take care of myself, both physically and emotionally.
But at that time, I was not ready. My answer became more and more curt: “I am where I want to be, and I am doing what I want to do.”
A saint? No way. I never was a saint and I never will be. Truth is, I was being very selfish. During this period there were times when my husband was very much himself. There would be humor, or insight, or affection. These were random, unpredictable, and I did not want to miss one of them. Nor did I want to give up the physical intimacy of our morning bathing, shaving routine. My motivation in staying with him was as simple as that: totally selfish.
As these moments became less frequent, I was infected with a terrible loneliness. It is not a loneliness that can be erased by an afternoon at the theater with a friend. I am lonely for him, for our conversations, for his strength and support, for all that we have shared. I am lonely for our marriage. His growing detachment is a hole in my life that no one else, nothing else, can fill.
In this universe of parallels, the rich memories that give me strength are also my source of pain, a constant reminder of how much this thief called Alzheimer’s has stolen from me.