How can you help in cases where illness with an uncertain timeframe is involved? The most important and sustaining help may come before the actual death of a spouse. See how a spritely young woman in her mid-eighties describes the death of her husband from complications of Alzheimer’s Disease.
Ed and I had a very long, loving relationship. The photographs of him all over our house remind me; his smile.
His was not a sudden death but rather, dementia that took him over 5 years. As I watched him disappear before me, there were wonderful people in our life who helped. When it became clear that Ed had Alzheimer’s Disease, I was totally open to asking for help. The help I received was transformative. The fact of having help and support made the last five years of Ed’s life difficult but not hopeless.
You ask about help when a spouse dies and I would say that the most essential help comes before the actual death.
The presence of caregivers enabled me to have some life, too. It’s a hard thing to describe – the impact of dementia. It’s not that it’s bad. But it’s negative. (It’s hard to describe). It’s hard to be in a house with someone whose needs are tremendous 24/7. I feel guilty even saying that. And guilty about all the things I could not do for him. I cannot imagine what this experience would have been without help.
Our parents’ generation did not talk about many hard things. My mother-in-law was a warm, strong woman who cared for her husband alone with dementia. I was once upstairs at their house and seeing Ed’s father in bed, I walked back downstairs to ask if he was all right. My mother-in-law said yes and that was it; nothing further to discuss. My mother, who was a registered nurse, didn’t say cancer, but whispered “CA."
Our daughter and Ed had always shared a certain kind of humor, so there were the sideways glances and laughs at the joke they understood better than anyone else. But she lived 3000 miles away and that sharing diminished. Our son, who lived nearby, and I had watched as the 2 of them roared; raised eyebrows to each other and moved on. As Ed’s Alzheimer’s became more advanced, I needed our son’s help. I need his help in both physical and emotional terms. Ed threatened to walk out of the house and Win could stop him or convince him not to go. Ed also wandered and had to be found. We relied at nighttime on our local fire and rescue squad, co-workers of our son and daughter-in-law. Even when the sheriff’s deputies appeared first,
they helped to get Ed back in bed and made sure I was all right, all of this no matter the hour of the night.
Ed was a really pleasant man; Mr. Congenialty. Only rarely was he cross. The painful part was watching him drift away. Sometimes he knew who I was; sometimes he did not. We laughed about it at times, but it was hurtful. And exhausting.
The people who appeared to help with Ed were generous — volunteers from Rhinebeck at Home, our local eldercare assistance program. They walked with him up to his beloved Burger Hill — 3 teams, 3 days/week. Eventually paid staff who helped him shower and dress, come back to feed him dinner. In between, there was a wonderful man who walked with Ed at the Ashokan Reservoir, picked peaches upstate, and visited interminably. Weekends were harder to staff. Ed and I drove and drove the back roads of Clinton, Milan, Millbrook hour after hour.
The help from professional aides and our friends gave me the free time I needed. They were flexible and helpful. They offered help and did not feel rejected if it did not work for us.
After Ed died, it’s me in a house. There seems to be a lot of space. My children and grandchildren are a great support. My Seattle family offers FaceTime and my Red Hook family shares picnics.
I am myself, doing all right. I could never express the gratitude I feel towards all those who helped me during Ed’s illness because it made his death and my understanding of myself then and now, better.
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