“We didn’t want to put him through that again,” she told me. I wrote previously about my childhood friend eventually dying with dementia after years of decline. His wife decided not to send him back to the hospital.
Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully? I have been thinking about end-of-life decisions for dementia patients because I just was interviewed for a podcast that focuses on helping family caregivers of these patients. Listen to “Rodger That” for my interview and scores of others.
With almost four million copies of my book Hard Choices for Loving People in circulation, I’m pleased to say I’ve received very few negative comments about the book. One person did push back against my characterizing dementia, like Alzheimer’s, as a terminal disease. People don’t die from dementia, they die from other conditions like pneumonia, they said.
Dementia IS a terminal disease
In my view, dementia has all the earmarks of a terminal disease. The patient declines over many years. The general trajectory is downhill although they may recover temporarily from some setbacks. Had they not had dementia they probably would have lived longer. The end is always in death. Sounds pretty terminal to me.
Me and my mother at a memory care facility the year before she died.
As with any end-of-life decision, trying to discern what the patient would have chosen is paramount. Consider this question the physician asked me and my sister after mom fractured her hip in the memory care facility, “How did your mom feel about her dementia?” He didn’t ask whether or not she would want hip surgery. Mom hated, hated, hated losing her mind. It was clear our goal was just to keep her comfortable.
I would venture that everyone fears ending up living their last years where you do not know your family members, are incontinent, and are dependent on others for dressing, eating and toileting. Who wants this?
Then why, oh why would a family decide to save the life of a patient in this condition when they could have opted for comfort care and allow a natural, peaceful death? I think most of us would choose an earlier exit from such a fate.
My mother’s doctor helped clarify this for us with his pointed question. We said, “No. Mom would not want any treatment that would extend her life.”
Letting go and letting be
A word of encouragement to those who may face making decisions for a demented patient: I have found, in general, families are able to get to a place to allow a peaceful death at the right time. The truth is the patient has been dying bit by bit for years. These families have been grieving the loss of all the pieces that make up the person they love — their memory, their health, their expressions of love, and so much more.
When it comes time to say, “Let them go peacefully,” it is just the next step because they have been letting go all along. It is time to just let things be.
