Another week has passed, and we are still struggling. Today, mom was completely unresponsive and couldn’t keep her eyes open at the dinner table. She didn’t eat a thing; I couldn’t even interest her in a bite of chocolate cake.
I read through the log book for this past week, and the consensus is that something she is taking is acting as a sedative. I suspect the Depakote, since that was bumped up to 500 mg (from 250mg), but the Inderal is also a possible culprit. Doc wanted to double to 20mg this week, but due to the increase in lethargy, Tim advised against that, and Dr. F. agreed.
To further confound things, she is now taking Bactrim for a UTI, and one of its side effects is loss of appetite. It had been awhile since I’d looked at her full med list, and when I did so yesterday, I thought to myself, “With all of these drugs working with and against each other, it’s a miracle things aren’t worse….”
So, here I sit ‘googling’ all of the meds, trying to solve the mystery that the great medical minds can’t seem to solve… How silly.
It’s days like today when I really have to wonder why. Days like today, quality of life is zero – or below. At least when she’s happy, you can rationalize that she is having some moments of joy. But, today – no. Tried to get her up to take her to the couch so she could be more comfortable, and she screamed at me. Tried to give her some cake, and she tightly sealed her lips. Talked with the girls, and she clapped her hands over her ears, then pounded the table in frustration. There’s not a damn bit of joy or life quality in any of that.
I’ve said it time and time again over the past 5 years; I know it is not our place to question, but it’s very, very difficult to understand the point in all of this. Joy – gone. Dignity – gone. Peace – gone. I barely even remember the person my mom used to be. And I’ll go to my grave wondering why; what the hell is the point of this disease?
She lived 68 good years before the signs began. Since then, she has lived 8 more, declining little by little with each hour of each day. While I often wonder how much longer she will have to bear living in this dark, frightening place, I also don’t want to let go of her… I can’t ask her advice any more, or have a conversation. We can’t laugh like we used to or reminisce about years gone by. But, I can still hold her hand… and that’s something, right? It’s something…
I miss her so much…
It’s terrifying on so many levels. I’m so sorry this is happening.
Thanks Natalie. Terrifying is the word for it…