Mom and I have been letting go and saying no a lot lately.
First, she started refusing her supplements and vitamins. Somewhere in her brain she still knows what the important pills are. She’ll never decline her thyroid med if someone reminds her what it’s for. So we’ve ditched the multivitamin and the vitamin E. Anyone who’s been reading this blog knows my mother is ready and willing to die as soon as she possibly can, and though I do still enjoy her in my life, I’m ready and prepared to let that happen without doing anything to delay it.
Believe it or not, some doctors still push mammograms and colonoscopies for even terminally ill patients, but that was easy to let go of. No way Mom would want to deal with chemo or radiation or extend her life at this point. All cancer detection tests, gone.
One doctor got righteous on me about this, saying if it was his mother and she was still only 74, he would never neglect to check for…. (blah, blah, blah….) Of course, his mother doesn’t have dementia or a terminal disease, so it was interesting that he felt compelled to give a speech that I mentally pushed the mute button on. Thankfully, he was an acute care doctor we never need to see again. We’re saying no to all preventative tests and care now, except dental work, because neglecting that could cause unnecessary pain.
I’ve also have refused any brain scans or MRIs to see what’s happening up there. Some doctors feel it’s important to make a correct diagnosis of Lewy Body Dementia or Alzheimer’s or whatever else could be befuddling mom’s thoughts. Not me, not now. When I ask them how it would change her treatment, they all say she’d basically do exactly what she’s doing now. Hmm……
Mom has this new behavior where some days she won’t and mostly can’t open her eyes. When I missed the call from her residence’s nurse, she was taken to the doctor and came home with a diagnosis and prescription (antibiotics) for conjunctivitis (pinkeye). As someone who used to work in early childhood and got pinkeye from the kids all the time, I know conjunctivitis was much more often viral than bacterial. Antibiotics are usually a waste of time and money and although they appease anxious parents who think they work faster, they also help create more resistant bacteria for our whole human society.
Interestingly, Mom had none of the normal symptoms of pinkeye. Her inability to open her eyes seemed more related to her movement disorder (parkinson’s/lewy body issues). When I called the clinic about my suspicion, I found they hadn’t taken a culture to pinpoint any bacteria. They just assumed. So I asked the nurse to hold the antibiotic and just use warm water compresses. Mom was fine the next day.
And finally on my list of recent unnecessary medical procedure rants, my husband and I took a risk and headed north this weekend to go to his family’s cabin for Labor Day weekend. Late Sunday I checked my cell phone and there were 8 messages, which I knew meant trouble with Mom. Turned out she’d fallen and was in the ER. We headed home just before 11 that night and got back to her memory care at 2AM, just as the ambulance pulled in to return her. After doing so, we realized we probably could have finished our rare vacation and she would have been fine. She was comforted by our presence, but not so much that a familiar caregiver couldn’t have done almost the same.
When I read the notes from the ER staff, I was proud of my mother and shocked at the unprofessional responses about her resistance to treatment. She had fought them hard over an IV procedure. “Why the hell do I need that thing?” They quoted her exactly, on the staff notes / discharge report.
Well, I had the same question, and called them up the next day. Why had they fought my mother over something that wasn’t medically necessary (she wasn’t dehydrated and didn’t need anything injected)? Why had they documented that she was a “most unpleasant patient,” and labeled her as “mentally and physically taxing to staff” when she pinched them and pushed them away, swearing like a sailor as they’d tried to force the IV in against her will? Why not consider her viewpoint and respect her boundaries, especially when they were fully aware of her “Do Not Resuscitate” orders requesting no unnecessary medical intervention?
The main reason I feel like I can’t get away these days isn’t so much because of what I need to DO for Mom, but for what I need to prevent people from doing that creates unnecessary stress and expense for her. It can get exhausting. This is why I so look forward to the time when she’ll qualify for hospice. Their staff will fight these battles for me.
Until then, the nurse at Mom’s memory care understands and respects my and her point of view, but is bound by company policy to get Mom to an acute care facility whenever something arises that’s out of the ordinary. I understand their perspective, and I wouldn’t want them to ignore issues that arise, but since Mom has been at the doctor almost every week this summer for endless little issues as she declines, I’m yearning and ready for even more letting go.