My grandfather died Tuesday, January 22nd. He had senile dementia – not Alzheimers, but an undiagnosed sort – a slow degradation of the brain from an unknown cause. It first started when I was very young. My aunt estimates sixteen years ago. My grandpa, never a boisterous man, got quieter and quieter, less and less active. His one hour naps became two hour naps, the ten words he said at every meal became five.
At first, my dad thought it was his overuse of salt that was damaging his brain. He and my aunt, a nurse practitioner, argued about this constantly for a few years. My dad stopped clinging to this theory when the dementia became more serious – its easy to explain slowness with salt, less easy to explain the total collapse of the mind that way.
My dad’s opinion seems silly now. But can you blame my dad for thinking this? There was no other explanation: my grandfather never smoked, drank (at all, his father was a drunk, and my grandfather once had to drive him home from a bar at age 8), or did drugs. He ate well, except for a little too much salt.
I complained about our inability to understand what happened to my grandfather to my aunt on the phone last Sunday. She qualified my answer, saying we know a lot more than we used to, scientifically, and that people understand it better now, culturally. “Grandma still referred to it as ‘Grandpa’s problem’,” my Aunt said. “But it wasn’t his problem, he was ill! But everyone used to think of that way. Mental illness was “Grandpa’s problem”, breast cancer was considered a “female problem”…
My aunt was right. We at least have widespread recognition, at this point, that dementia is not the fault of the demented.
But we still don’t have a way to deal with it, to explain it. At least not any that satisfy me.
Maybe it’s the fact that I grew up Christian, and Christianity struggles with dementia. How do you explain when the person – who is supposed to be defined by the choices they make, the sins they do or do not commit by those choices- loses the ability to choose? K.B Napier, writing for Christiandoctrine.net, at least gives it a try.
When, say, a [demented] Christian speaks in obscenities or with other swear words, it may simply be the accumulation of what has been heard over time. As Believers, we all hear and see things we would wish not to hear and see. These enter our minds and are usually discarded because they are not right for us to consider. However, the damage has been done. Many years later, if dementia develops, these unsavoury memories, long ignored or forgotten, begin to come out. Not out of choice, but because the brain cells and mental processes that normally screen out such things, are dying. In a progressive dementia the brain usually shrinks and/or cells die at a varying rate. As they die so various activities change, and there is nothing we can do to stop the changes. The Christian son or daughter, then, ought not feel guilt at the ‘naughtiness’ of their loved one, who is unaware in the normal sense of what is happening.
So choice is removed from the equation. The demented is not a person, per se, they are rather something of an animal – a being that acts without conscious choice, and thus is not guilty of sin.
Of course, this leaves out the ambiguous territory of the slightly demented. We humans think in binaries more often than not: us and them, good and bad, demented and not. At what point does a person stop becoming responsible for their actions? And if they are no longer a human, do they lose their right to life? Might death be a mercy to them?
Napier goes on to eliminate this possibility,
Few forget who their loved ones are, even if it appears to be so. One gentleman, diagnosed as having advanced dementia, told me that he understood everything that went in to his mind, but he simply could not express it. Yet, it seemed that he did not recognise his own wife. In all this, then, there is much hope. Dementia is a physical illness and it is devastating. But it need not be as terrible as it at first seems.
Lynn Casteel Harper, a Baptist Minister writing for the Huffington Post, echoes a slightly modified sentiment,
If, eternally speaking, the person is no more or less “real” today than she was 30 years ago, then perhaps the “real” problem is our inability as bystanders to offer our presence to the post-dementia person.
No doubt, opening ourselves to a person with dementia, with their puzzling and sometimes jarring responses to the world, is a herculean task. When I spend time with individuals with advanced Alzheimer’s, I can expect no ego-stroking return on investment, no affirmations of a job well done.
Offering one’s presence to a person with dementia means letting go of our need for rational interchanges, direct social cues, logical conclusions. It often means letting go of words altogether and entering entirely into the realm of affect and intuition.
My grandfather may not recognize me when I visit, but he can intuit care and love. He can feel my hand holding his and know, in a place beyond words, what this touch means.
This is the way that our society,at large, has decided to handle dementia. The person is not responsible for their agency because they are no longer capable of choice, but they are still capable of love, and thus their life must be protected.
And here is what seals the whole thing: The demented person – robbed of their choice – cannot choose to die, even if that was what they would prefer, so they must be allowed to live.
Yes, a person’s life is sacred, even when they cannot stop themselves from urinating in their pants, even when they forget everyone, even when they forget, as my grandfather did, how to swallow. It is only compassionate that we spend millions of dollars to keep these people half-alive when our schools are underfunded, our poor and homeless are not cared for, and our social safety net is being torn apart.
And this rosy, pro-life notion is of little pragmatic use. In a practical sense, we end up hoping that our loved one will pass on their own, in a timely matter, as God intended. My aunt, who is Christian, by the way, handled my Grandfather’s care fantastically in these respects. She made sure that the facility where he was would not give him medical treatment, but only pain medication. This was the balance she chose. When the hospital staff continually gave him unnecessary treatments, she had him moved to hospice.
My dad, who was adopted, I should add, so has no connection to my grandfather genetically, is terrified that it might happen to him. He seems almost convinced of it. He has told me that if that happened to him, he’d rather be dead. But it’s unclear how, exactly, he would be able to make that wish come true.
It makes me afraid to face all that ambiguity, and I know it must be worse for him. No matter how rosy a portrayal the likes of Napier, Harper, and Amy Grant can give of dementia, it is a horrible thing, and once it passes a certain point, there is no sense in prolonging it.
I would like to propose that we need a new ethics of dementia, one that does not idealize the demented’s suffering, but acknowledges it and thinks pragmatically about the real meaning of mercy in the dementia’s context. Pro-life dogma is of little use in such a complicated issue.