We have good days and bad days, and today is an incredibly difficult day.
I’m over tired and grumpy.
Today this is overwhelming, today I’m wondering what the fuck we were thinking. And Dad is having one of those times where he can’t find words, and hes bored and restless and I don’t feel like I have the patience for this.
I’m writing these so often because this time next year I believe he’ll be gone, and just like I look back on my mental health progression, I want to be able to look back on this time in my life, as well as the progression of his disease.
This one is long, apparently I have a lot on my mind tonight.
Dad has always kept his house at 80 degrees. I keep my at 68, plus have fans going constantly. One of my bigger complaints when I would come see him was that it was hot and humid and gross inside, not to mention outside. When I first got here, I turned the damn AC down to 72. Still hot by my standards, but at least I’m not dripping sweat. And I’m working my ass off here (literally, this is one hell of a weight loss and exercise plan.) Today Dad was cold, and he wheeled himself over to the thermostat, first time he’s noticed since he came home. “Turn this back up, no wonder it’s cold.” “Dad, you’ve been fine for 4 days at this temperature, we can get you a sweater if you’d like, but I can’t take care of you if I’m sweating so badly that you slip out of my arms.””Oh.”
He went back into his room to watch TV and when I came in a few minutes later, he was struggling with the comforter that he’d pulled off the bed. I asked again if he wanted a sweater and he said no, so I bundled him up.He had me take him into his closet a little while later and he picked out a sweater.
The hospice nurse came today, 3rd day in a row as they get him set up. Today was the care plan.He’ll have an aide 2 or 3 days a week to bathe him and help him shave, etc. They are going to figure out if using the chair in his shower works, or if we need to get a transfer bench that we can use over the regular tub in the guest bath. She said it was great that I’d gotten so much stuff, but said don’t buy another thing without asking them first. They cover most of it. Yesterday they brought waterproof pads and briefs and wipes and gloves. Today they brought him a hospital table, a cushion for his wheelchair, and something else. A fully electric bed will be here any day now.
I asked if a lift chair was possible, I can’t get dad in and out of his recliner, but a lift chair would make it possible to transfer him. She said no, but if you find one, we’ll reimburse you for the cost. We can even help you find one if needed.
The social worker will be out one day this week, she can help arrange respite sitters and connect us with other community resources. Most of his medications will be mailed to him now, without a copay, and if we have to pick something up at the pharmacy they gave us a card which will waive the copays there as well.
They are sending out a speech therapist and a physical therapist. I can ask tomorrow about occupational therapy, because I forgot. The goal is to maintain his current abilities and quality of life.
I was shocked when they said they could provide a mechanical lift for transfers when he can no longer help us with that process. I hope he doesn’t live that long.
The nurse recommended we get him a laser pointer for those times when he can’t find words. He can point from across the room and show us exactly where something is. I wonder if one day we’ll have a picture board for him, just like I had with my son before he could talk.Today I could tell he was depressed. The reality of this situation is setting in.
He told me I talk too much, asked me if I ever stopped yakking (nope dad, I never stop, sorry). I’m sure it sounds incredibly loud when you’re used to a silent home with no one around.
He was restless, moving from one room to another, calling for help when he couldn’t push himself anymore. He never did settle on anything to do, eventually asking me to help him to bed even though it was only 730.And he was wiped, once again dozing off before he could help me pull him up the bed. He was dead weight in my arms.He asked for his night meds, said he was just done for the night. He choked while taking them, trying to gasp for air. It was one of the scarier things I’ve been through with him, as I quickly raised the head of his bed getting him more upright. He eventually cleared it, but he’s been coughing ever since.Losing the ability to swallow is one of the symptoms of his illness, aspirating foods or liquid will often cause pneumonia. Pneumonia is regularly the cause of death with his condition. I sit in the kitchen hearing him dose off and wheeze a bit, then wake up with a little cough and clearing his throat. I could call the hospice nurse, but it would just wake him back up when she got here in an hour (he’s so far out from anything), and it’s not like they can do anything anyway.I have the number in my phone though, and I’ll be listening to him through the monitor all night, stirring with every cough. I will call if it becomes too bad, because maybe they can do something to make him a bit more comfortable.That’s the purpose of all of this. That’s the reason I’m here instead of letting him spend his final days in a home. I’m here because no matter how difficult our relationship has been, he deserves to spend however long he has left, at home, or at least as much time as I can give him.
Wednesday his dog comes home. It’s been almost 2 months since he’s seen her and he misses her so much. I’ve hated that we had to wait this long but I needed to have a routine down, before adding another mouth to feed.
And for the first time since he came home I just burst into tears reading back over this. My dad is dying and I’m watching it happen before my eyes. Maybe it’s just a few bad days, maybe this is our current new normal. There will be lots of new normals before this is over.
I hope I’m here when it ends, and not my son. I hope he doesn’t have to find him dead in his bed like I found Parker. But I’ve already talked to him about it. We know it’s a possibility.
Hopefully he’s still in his own home, with his dog, when that day comes.