Another day has brought with it more unrest and a definite need for some serious soul searching.
Running on Empty
In the past two days, I’ve had essentially no sleep. I’ve locked myself in my mom’s room to write this post and settle my nerves a bit. She’s been up and restless all day, and absolutely refuses to lie down. In fact, she really doesn’t even want to sit. She’s terribly weak and unsteady, yet she wants to stand. So we’ve stood. We’ve walked. And we’ve stood some more. We’ve sat in the chair, the recliner, the sofa, the loveseat – it’s been like an extremely long game of musical chairs, but not nearly as fun.
First thing yesterday morning, I made an appointment for hospice to come out at 9am today. By 4pm, I’d talked to the neurologist and decided to cancel the appointment. Now, I find myself wondering if I did the right thing.
We’re dealing with severe orthostasis on top of late stage Alzheimer’s. We’ve taken her off of her hypertension meds and beta blocker and the issue persists. Our doctor believes that much of the difficulty she is having right now is a direct result of the blood pressure issues, and that if we can resolve those, she might return to baseline. He prescribed a new drug, which she started this morning. Blood pressure is up a bit, but no change in symptoms.
I realize it’s just day one; too early to make a determination. Every time we try something new, it requires a “wait and see” approach – and patience. I’m the first to admit patience is not my forte, especially when we’re on what feels like the 254th change and “wait and see” cycle in the past 6 months. There a couple of lessons I am certain I’m supposed to be taking from all of this. One is patience. The other is the realization that I can’t control everything. In fact, there is very little in life that I am truly able to control.
I suppose the neurologist was as compassionate as possible for a brilliant scholar, but he was also very realistic. He thinks trying the new med is the best approach, but he doesn’t know. Hospice is an option, but they will come in and administer narcotics until her body shuts down. She will be gone for all intents and purposes. Sounds cruel in a sense, but is it really?
It’s funny, I’ve always said I’m in favor of euthanasia if the proper protocol is followed – patient specifies their desire well in advance of any illness, while of sound body and mind. For me personally, it’s a “no-brainer.” I never want to lose every last shred of my dignity while my loved ones helplessly witness it. But, then, neither did my mom.
So the soul searching continues. How long do we wait? What exactly are we trying to accomplish? After all, the disease has no cure. Are we just prolonging the inevitable? She is so thin and frail at this point that it’s staggering. Let’s face facts; mom is miserable the majority of the day and night. The smiles are fewer and fewer. This is what the late stages of Alzheimer’s look like. I’ve had moments in the past 48 hours where I didn’t think I could bear to see her suffer for another minute. But then, this isn’t about me and what I can bear.
This is about what’s best for my mom. And she is tormented for hours on end. If we get the orthostasis under control, and if the severity of her distress returns to baseline, so what? We wait a few weeks until the next thing crops up? Another UTI? Pneumonia perhaps? This is a no win proposition. Even the neurologist said there is no right or wrong answer. “You are in a very difficult situation.”
The Ultimate Question
On paper, it seems fairly clear. And then we have a couple of good hours, where she smiles, laughs, and makes her best silly faces. Those are the points at which it feels like we should continue to fight. Because that’s what you do, you FIGHT. The question is, how long do you fight a battle you’re destined to lose? And how much suffering is enough for the innocent woman who didn’t ask for any of this? What would SHE want?