Sister of Mercy?
Or Sister of Death?
Mom went to the ER a couple of weeks ago. She was in the kitchen after dinner, talking to the dishwasher (conversations with inanimate objects are not unusual in our household - how 'bout yours?), but her posture struck me as strangely wrong. Her knees were bent weirdly and she was almost doubled over. Concerned, I placed myself between her and the non-communicative appliance, wrapped my arms around those bony shoulders only to have her slowly collapse into me. I couldn't keep her upright so I guided her down to the floor, realizing then that she was sweating profusely yet cold to the touch. Her eyes remained slightly open but were not tracking movement as I frantically waved my hands across her vision. This lasted for several minutes. The Boyfriend in the Basement took over cradling her head while I called 911.
I was terrified. Was she having a cardiac event? Was she having a stroke? Was she dying on me right then and there?
At the ER we found out it was none of those things. Her blood pressure had returned to normal, all blood work was good, and an IV helped relieve minor dehydration. The ER doctor attributed it to a fainting spell and recommended a medication adjustment to decrease the chance of a repeat incident, then sent us on our way. That's when I realized it was a trip to the hospital that was not worth the stress it caused Mom. That's when I realized I have to start thinking about when not to take Mom to the hospital.
That's when I realized it was time to start figuring out when to stop preventing Mom's death.
The next day I reviewed her POLST and Advanced Directive for guidance, perusing the choices Mom had made years ago regarding future medical events. For those of you not familiar with these two documents they only cover END end-of-life measures, like tube feeding and life support. While that's super valuable information, it doesn't address the other potential catastrophic medical events I'm wrestling with.
Such as... Mom had a bout of flu last winter, is it time to stop treating for things like that? What if she has a stroke or a heart attack, do I just get her comfortable in her own bed, call hospice and let nature take it's course? My understanding is that heart attacks HURT, strokes less so; are they more painful, or less painful then choking to death on her own spit because her brain has forgotten how to swallow? And how would I even be able to tell if she's experiencing one or the other?
There are some scenarios that are easy to figure out; Mom falls down and has a bone sticking out of her - oh hellz yeah we ER roundtrip that shit. However, if Mom is diagnosed with cancer - that's a definite no go on doctoring that up.
I personally doubt there's a health professional alive that could get her through a chemo treatment, and on the self-preservation front, pump radiation into Mom and I'm positive she will turn into Momzilla for reals, raining dementia destruction down on everything she sees.
I've also fretted over the possibility of criminal implications. Could I find myself on the news being blasted for not giving my mother another year to die of dementia because I decided not to put her through the severe stress of a medical event? If so, do they at least give me time to shower and put on clean underwear before the on-camera arrest? Mom always said wear clean underwear because you never know when you're going to be in a... jail. (Gawd! I still hate it when she's right.)
I wouldn't be surprised if Mom was no longer with us this coming Christmas. Alternately, I wouldn't be surprised if she's got another three Christmases left in her - except for dementia, she's fairly healthy. A review of the GDS Scale; Seven Stages of Dementia wasn't helpful in narrowing down the timeline either - Mom's got one foot planted firmly in Stage 6 and another in Stage 7.
So, I had worked myself up into a bewildered state of heartaches and gut punches grappling with the morbidity of it all. I finally turned to the ALZConnected caregiver forum and was grateful for all who shared their experiences with me on this topic, reaffirming once again that we are not alone in this journey and that there are no wrong decisions in dementia when they come from a place of love.
I also consulted Mom's PCP, which was a little less helpful as Mom insisted on wandering all over the clinic's hallway during the appointment, calmly tearing down motivational office decorations as she went. Dr. Monica and I slowly followed in the path of destruction while I vomitted up all my concerns and fears.
"What if she has a heart attack?" I said, tears welling up suddenly.
"What if she does?" Dr. Monica responded simply. Those words physically reverberated through me as my eyes snapped fast to hers, only to see a face full of empathy and understanding.
That understanding calmly spread through me, not an emotion infused with tender warmth, nor a chill of cold-heartedness, but a realization that when the business of dying begins in earnest I will make the most compassionate decisions I can. That I will be neither a Sister of Mercy, nor a Sister of Death, but a Daughter of Devotion who will do her best to be worthy of her mother's love.