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Alzheimer's: Goodbye, My Love

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What Nancy Reagan called the long goodbye has, for me, come to an end. My beloved husband has died, peacefully, in his own home, surrounded by people who loved him.

It was indeed, a long goodbye. Seven years spent with Alzheimer's.

And a final year, playing hide and seek with death.

We first felt death's presence a year ago. A beautiful, brisk bright January Saturday in Manhattan. We had lunch at our favourite French bistro and, although Alzheimer's had staked its claim, my husband was engaged with his surroundings, watching the many young families, smiling at the little girls, enjoying a Bloody Mary and a delicious lunch. Outside, he said his back hurt, and then that he had to sit down. Almost instantly, he was collapsing in my arms. Two men passing by, noticed, helped me get him to sit on a newspaper box, where he lost consciousness. They called an ambulance and the verdict: heart attack, followed by another heart attack in the emergency room, and a week in hospital.

He never really recovered from that experience. Once home, he seemed more confused and disoriented than before. Where he had walked, using a cane, now he required a walker and, despite physical therapy, never was able to recapture balance or the strength in his legs. But the most serious consequence was a loss of courage, on both our parts. The memory of him slipping away from me, losing consciousness in my arms was very strong. Because of that and other, more practical reasons, going out with my husband became more difficult. He was sleeping almost 16 hours a day, so our life revolved around home. We began to live in a even narrower world.

Then, death tapped on the door again. Breathing became more difficult. The diagnosis: congestive heart failure (chf). The verdict: time for hospice. Although an outside observer might have looked at my husband's life then and concluded that there wasn't much to live for, not much of what we think of as quality of life, clearly, he did not agree. Within three weeks, there was no longer a sign of chf, and his breathing was normal. He failed the hospice test -- he lived.

Death took a back seat, but Alzheimer's stepped up its pace, bringing more indignities to my gallant and elegant husband. Additional caregiving was required. Even so, we spent a summer at our home on Long Island where we enjoyed the garden that was my husband's creation, visits from family, and a long stay of two beloved Labrador retrievers, Clemmie and Luna who, when they were not playing docile females to our King Charles Cavalier, Brewster, monopolized the pool and then put large, wet heads on my husband's lap. It was a happy time. A never-to-be-forgotten two months of quiet joy.

Beside him, every day and every night, I did not notice the changes that were evident to those who did not see him so often. He was losing ground, both physically and mentally, weaker in the legs, needing a wheelchair more and more often, less and less aware. Still, when we returned to New York, to the excellent care of the Irving Wright Center on Aging, part of the extraordinary New York-Presbyterian Hospital, his vital signs were excellent, and there were many beautiful moments together. Around Christmas, there came some quite remarkable, isolated, moments when he was very lucid and showed flashes of his old sense of humour. They would catch us by surprise and, although fleeting, and unconnected, they were precious.

I decided to go back out to Long Island over New Year's. I told him we were going and he clearly understood that, and seemed to be looking foward to it, asking a couple of times when would we go. Our dear friend Dennis drove us out, my husband as always in the front seat where he and Dennis had more than once shared their assessments of the girls passing by.

Two days after New Year's, his speech was slurred. The next day, he had a small stroke. Local hospice was called in, and they advised me to suggest to the family that they come to say goodbye. But by that afternoon, he was sitting up in bed, able to say to a visiting son and grandsons, "Thank you for coming to see me." Had we dodged death once more? Later that day, he asked me, "Where are we anchored?" and in the middle of the night he insisted on sitting up, and said, "I need to go to San Francisco." He would never speak again.

His breathing became so difficult that we brought in a hospital bed. I thought that might upset him but by the time we moved him, he was in a coma. That night, me, alone in our bed, with him across the room, in a hospital bed, was indescribable agony for me. A separation of a few feet felt like miles. My children, his beloved step-children, arrived, along with a grandson and his wife. There was a constant rotation of people who loved him by his side, including our caregivers Martha and Gene and the extraordinarily caring nurses from The Brookhaven Memorial Hospital Hospice.

And, our dog, who stood on back legs, poking a nose through the rails to lick an inert hand.

One day, near the end of this vigil, my husband reached up, looked into my eyes, put his hand on my chin and turned my face away. What did that mean? Was he telling me to let him go?

Perhaps, because two days later, six days after that small stroke, I was sitting by his bed with my son. It was mid-afternoon. I looked at him, as he took a breath. I called out to the others who rushed to the bedside. And he was gone.

Wearing a pink silk pajama top, peacefully, softly, without pain, his beautiful mind, quiet and whole, at last.

See Joan's series about life caring for her husband here.