Over the last ten years, there have been more times than not when I have been called on to make a decision about my mother’s care that was better left to a doctor or a nurse. Whether on the phone with a cardiologist, or standing in the hallway talking to mom’s primary care physician, inevitably what comes out of their mouths has been “well, try it and see what happens” or my personal favorite, “it’s up to you.” Hey, thanks.
The latest foray into “try it and see what happens” is with a dual action pill that stimulates the appetite AND helps with sleep. Win win right? You would think. I have been hesitant because my mother has always been VERY susceptible to medicines and their effects, let alone their side effects. She is already dizzy at times from her vertigo, and unsteady on her feet, and one of the side effects of this pill is dizziness.
But as her dementia progresses, so does its horrible, unrelenting, issues. Mom has lost ten pounds in 4 months, has been very agitated, hallucinating, extremely unsettled, and not sleeping. I filled this prescription 6 weeks ago after her last doctor visit, but wasn’t ready to take that leap into the world of pharmacological assistance. I didn’t want to be the one to make that decision.
It’s different when you can talk about the pro’s and con’s of medicines and treatment plans with the person you are caring for, but dementia steals that from you also. It becomes a solo mission of which I try desperately to weigh the options.
What was I afraid of? I was afraid this drug would change her, which, when compounded with the daily changes I see, doesn’t really make sense. So, I sat with that question some more. What was I afraid of? I was afraid it was my signaling that I was giving up. That I was saying you win dementia, but really, dementia always wins.
The tipping point was the day after she was awake for 22 hours - No one should be awake for 22 hours unless there is dance music involved. I decided I would try the pill that night because I had no other choice. I gave her the pill, and that night she was up every hour. I mean up, out of bed, every hour. Looking for her ring, looking for her sisters, just plain looking.
I kept asking her to lay down, she kept saying how sleepy she was. I was at the end of my rope and at 5:30 am, I realized I am not in control of this. I am not the driving factor of this disease, if I was, she wouldn’t have it. That night, I gave her melatonin AND the sleeping pill/appetite stimulant again, and I hoped for the best.
I tucked her in, I told her she was safe, she was welcomed, and she was loved and I took my exhaustion, my sadness, and my anxiety and got in bed. She proceeded to sleep for 16 hours, which as great as that was, was also one of the things I feared, sleeping too much. She woke up and was dizzy, quiet, and not herself.
She had her eyes closed for most of our conversations and all of her shower. My heart sank. I felt like I had made a horrible decision, a huge mistake, an honest one, but a mistake none the less. As I was dressing her I said, “oh mom, I am so sorry” to which she opened her eyes and replied, “Sorry? Why are you sorry? You should be happy.” Guess I made the right decision.