Lately the caregiving has been in a good groove. My routine has become to spend a lot of time with Mom on the weekends. During the week I’ve stopped making the long drive to visit. I completely let go from Monday-Thursday and hope for the best. I don’t even call because she can’t remember to hold the phone up to her ear, and she just gets agitated.
Things on the surface are more calm and steady than they ever have been so far, but like many caregivers, I still have nagging concerns about my role, the ethical decisions and boundaries, where to set my expectations, and where I might need to let go more.
Below is a copy of the email I just sent to Mom’s hospice social worker, which I decided to share here because sometimes I avoid posting on this blog because it’s too exhausting to try to put all the things that have been running through my head and my heart into words. So I can either abandon the blog, write sporadically on the months I can summon eloquence, or just post whatever I can muster. Today I opted for the latter.
Dear (hospice social worker name here),
Regarding your question about what I was wanting help with, I have some ethical questions about Mom’s Parkinson’s meds. It seems that to some extent they’re extending her life. She asked me many times in the past not to do that, and I also have my own concerns about her going on and on in her limited life state for more years than would occur without medical intervention.
In the last couple years, Mom’s asked me repeatedly to stop all her meds to help her “move on”. I felt that was too risky under the circumstances. She was often agitated and her behavior and moods could be unpredictable. I didn’t want her to end up back in the psychiatric hospital having to take even more drugs.
But now that she’s much more at peace both on the days she takes the meds and the days she doesn’t, I really don’t know what’s best for her in the long term. I do realize that she drools a lot more, sleeps a ton, and rarely opens her eyes when she declines the meds, but I haven’t noticed any discomfort, other than mine, since it can be hard to witness. I used to think she was near death on those non-responsive days, but now I’ve come to realize that it’s probably the temporary lack of dopamine. Whether or not that means anything about a shorter life if it were to continue, I don’t know.
I don’t feel like we need to change anything with her med routine at the moment. I’m content to let her decide whether she takes her pills or not and not worry about it either way, as long as she seems reasonably peaceful. But I do feel like it would be helpful to gather more information about these issues for the future. I’d be interested in hearing what your doctor has to say and the experience of your staff in these kinds of situations with advanced Parkinson’s/Lewy Body Dementia.