Ch. 13. Mortality.
Pat and I attend in St. Paul a Lewy Body group for people with Lewy Body and their caregivers. Today a new member asked the inevitable question: “How long do people with Lewy Body Dementia live?” Nobody answered. In fact, nobody moved or said anything for several seconds. Finally, Paula, our facilitator, answered: “Researchers say 5-7 years after diagnosis is most common, but some people live longer. They usually die from sicknesses partly due to the effects of Lewy Body rather than from Lewy Body itself.” The woman who asked the question had been diagnosed three years ago, Pat about one year ago, others in the group up to five years or more.
There we sat with five people facing their mortality, looking sad, or scared, or stoic. And there we sat with five caregivers looking sad, or scared, or stoic. Waiting for someone to shift the topic. But Pat, courageously, spoke up: “I don’t want to die now or in five years or ever,” she said. And I don’t want her to die, either.
My wife has a fatal disease. We don’t talk about it a lot. But recently she became ill with an infection. I guess that spurred thoughts on mortality. She surprised me by giving me permission to find another woman after she dies. I was surprised mostly because Pat is quite scared of dying and usually completely avoids that topic. But perhaps she doesn’t realize that I cannot think that far ahead. I cannot contemplate life without her. And think about it: right now, we spend probably 95% of our time with each other, sometimes in separate rooms but usually in the same house, car, motel, meeting, friends’ home, or restaurant. Lewy Body brings partners and families together both by necessity and by love.
So, as it stands now Pat may die before me, perhaps in 4-6 years (since she was diagnosed about a year ago), by which time we’ll be about 80 years old. That’s 1,400 – 2,100 days from today. Possibly, though, with a little luck, we can squeeze in another couple thousand days. One of our goals must be to make fruitful and joyful as many of those days as we can. How well we do this depends a lot on how slowly Lewy Body progresses but also on how determined we are to celebrate our love during the time left.
I hope we can continue to discuss mortality as a couple and in our support group. I know I need encouragement to deal directly with this daunting reality.
Pat’s comments on mortality:
[Pat to Ron]: “I don’t want to die now or in five years or ever.”
Mortality is the only damned thing that scares me. I don’t want to go away. I still have things to do.