Tonight I popped into Mom’s memory care unit much later than I usually do. She struggles at night, and often complains about staff not helping her. I walked into her room and found her trying to undress herself, crying.
I helped her get ready for bed and the whole time she pleaded for me to let her die- to let her stop all her meds and “get this over with”.
She’s been pretty consistent with that plea every day when she gets to a point where she’s feeling miserable, which is when her meds wear off.
During the 40 minute drive home in the dark, I agonized once again, wondering if I’m doing any of the right things. Her residence is much better than average; the caregivers are upbeat and generally helpful, though definitely not perfect. I highly doubt that any residential setting will give her the kind of soulful and steady hand-holding she’s wanting and needing right now. The only place I can do that is at home, by hiring caregivers to help out, and she would have many concerns and insecurities with that situation, as she did when we tried it and failed before.
The truth is, Mom won’t be happy anywhere, probably ever again, because no place is her home. With that understanding, I do the best I can, with the knowledge I have, but sometimes it doesn’t seem like any kind of life to keep living, especially on the days I can’t take her out to do something she loves.
Tonight as I drove home, I was thinking about her begging me for the right to die. The right to let nature take its course. Her life has been mostly miserable for the last three years, with little to look forward to. Some of the time I think that maybe new meds, more activities, and a better residential setting could maybe cure her heartbreak, or at least distract her into having a better time until she does eventually die. And some of the time I wonder if the doctors and I are the fools- not letting her let go.
It’s hard to let go and let her make such a decision when you know dementia is involved, there are medication issues, and you’re the sole family caregiver who would even venture to get involved in that area, so all the confusing and heartwrenching ethical pressure’s full force on you.
But I know my mom, and she discussed these issues when we were kids. She never wanted to be a burden, never wanted any lifesaving measures, and she wanted to go when it was her time. So how do I let Mom go when the doctors can always do more? No matter if that more means disturbing side effects and losing her sense of selfhood.
These are the impossible questions, and I know I’m not alone here.
I just discovered this issue I’m struggling with that Mom has requested is termed “involuntary euthanasia.” It differs significantly from voluntary euthanasia, which is incredibly controversial. If you’re religious, involuntary euthanasia is a fancy way of saying to “let go and let God decide“. If you’re agnostic (like Mom) or an atheist, it simply means doing it the old fashioned way and using nothing modern or fancy to delay death. It’s something I wish we talked about more in our culture, in the doctor’s office, and when we write our wills.
Fortunuately, Mom was very clear about her DNR order in writing on her will, and also specified no tube feeding, etc., but such documents don’t address how we can act when our loved one feels ready to die intentionally, by refusing meds or further treatment, in a state that could be considered “out of one’s right mind.”
For now, all I know to do is to keep gathering information from support groups, doctors, therapists, and Mom herself, and keep advocationg as helpfully as I can, plodding on with my broken heart, right along with her.