“Don’t ever let me get like that.”
Sally’s 7-word reaction to the movie said it all.
We had just watched ‘The Father’ starring Anthony Hopkins. It’s the story of an 80-something year-old man in London struggling with dementia. The movie is filmed in a way that forces you to not just observe him, but to experience his confusion for yourself, to get a brief glimpse of what it might be like to have dementia.
It’s masterful. The performances are superb. It’s painfully important for you to see it.
It immediately forces us to address our worst nightmare: What if we get like that?
Our parents’ worst nightmare was becoming a burden to their children. Themselves children of The Great Depression, they feared financial insecurity that would deny them their independence as they aged. They didn’t want to add the weight of caring for them to their children who would be simultaneously carrying the burden of raising their own families.
But that generation didn’t expect to live long enough to dement. Seventy was considered a ‘ripe old age.’ The prevalence of dementia wasn’t what it is now.
More than half of us baby boomers will live into our eighties…and the incidence of dementia will increase. It’s our worst nightmare.
If dementia is the path before me, is it possible to prepare for it like I did with retirement? What happens when I stop being me? When is being alive not the same as living? Where are the inflection points?
I’m wrestling with all of those questions.
There is one school of thought that says we are constantly changing throughout our lives and that dementia is just another aspect of that change. You might become different as you dement, but you are still you.
I don’t think I agree with that.
Our life changes are forged from our experiences that shape how we relate to the world: how we think, feel and act. In normal aging, we continue to grow and adapt to our changing bodies and environment until we die.
The dynamic is quite the opposite in dementia. There is a physical process that is attacking our capacities, our stored memories and our adaptations. It is fundamentally changing how we think, feel and act–not in the furtherance of our ability to survive and cope with our world–but in direct conflict with it.
That’s not living. That’s dying.
Hospice and palliative medicine physician B.J. Miller, In a recent New York Times opinion piece titled ‘What Is Death?’ wrote:
“For some of us, death is reached when all other loved ones have perished, or when we can no longer think straight, or go to the bathroom by ourselves, or have some kind of sex; when we can no longer read a book, or eat pizza; when our body can no longer live without the assistance of a machine; when there is absolutely nothing left to try…If I had to answer the question today I would say that, for me, death is when I can no longer engage with the world around me. When I can no longer take anything in and, therefore, can no longer connect.“
I agree with Sally: ‘Don’t let me get like that.’
In the 2014 film ‘Still Alice,’ Columbia University cognitive psychologist Alice Howland (played by Julianne Moore) develops a suicide plan after receiving a diagnosis of early onset Alzheimer’s Dementia. She designs it to be implemented at the inflection point when she loses full agency over her life. Spoiler alert: Her plan doesn’t work.
In ‘One Flew Over The Cuckoo’s Nest (1975),’ after witnessing the life-altering effects of a lobotomy on Jack Nicholson’s character, Chief holds a pillow over McMurphy’s head and smothers him to death. He knew that Mac was no longer Mac and that his life had already been stolen from him.
So it appears that there are a few questions that need to be asked and answered. First, is there a point when dementia meets Miller’s definition of death? And, if so, is there anything we can do about it?
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