1 January 2021
Rea and I greeted 2020 at Madison Square Gardens in New York City. This year we slept through the year's demise. It deserved no better.
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I don't know if I'll keep this journal up after Rea is gone, but in a way I hope so. I also hope I'll be able to write about things that aren't so depressing.
Rea slept well last night which was a relief after the night before. Both she and I were exhausted yesterday which is never good, though I survived it somehow.
C-19 vaccinations are rolling out, but they aren't a quick fix and as has typically been the case recently we have a bunch of people who are freaking out over the whole thing. It's not nice, but I'm really tired of a decent percentage of my fellow human beings.
Rea will not be here this time next year barring an epic miracle. I'm resigned to that and we're getting closer and closer to the point where it would be a mercy to her and those who love her.
Near the start of this whole ordeal, she and I discussed assisted suicide and she decided against it. The thinking at the time was that by the time she was incapacitated enough to want to go that route she wouldn't be able to make that decision. It's certainly not one I would make, even if I could. I don't have any religious objections against it. I know it's supposed to be a sin, but frankly nearly everything is, and if you're forgiven, then why does it matter? I'm sure a theologian could rip me apart on that one if so inclined. Thankfully I won't be judged by a theologian.
3 January 2021
It's hard to believe it's been a month since my mom's passing. I'm going to try to put together a video to go along with a rough demo I have of "Part of a Chain" which is a song I wrote four or five years ago about my, at that time, incomplete family tree. It features both her and my biological father Dennis, along with my dad.
Rea often mumbles or says things that she doesn't complete or that don't make sense. Sometimes she'll express her desires by implying that somebody else, often a person not present or no longer alive, wants something. For instance, to go to the bathroom. I think she's also having trouble recognizing people, including me. Yesterday she said something along the lines of "Mike is a very good writer" to me. Which was both incredibly flattering and really really sad, since I was sitting right beside her and she said it to me.
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On the off chance that somebody else reads this, particularly somebody "guilty" of the following, please don't feel bad.
People expressing their sympathy for the situation Rea and I find ourselves in is understandable and good. There is a variation, though, that I don't really enjoy. It's when they say things like "You must be feeling awful". Why yes, yes, I am feeling awful. Thank you for reminding me.
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While I'm venting, no disrespect to people who believe in karma, but I don't buy it. Too many people do bad things and get away with it while others are for the most part good and suffer. Rea is my exhibit one of that second case.
4 January 2021
Rea's friend Debbie called today and they got to chat for a bit. Rea was having a good day but still struggled when asked anything but very simple questions from what I could tell. Still, it was good for her to have a chance to talk.
I'm far from the only one struggling with Rea's recent decline. She is truly loved by her family and many friends.
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I suspect we're less than a week away from going close to full-time care for Rea. Financially I can swing this but it's going to take some work.
Money may not be able to buy happiness, but it can buy peace of mind, and that is more than enough sometimes.
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It turns out that Tutu was the poodle they had when Rea was growing up. One mystery solved. Her younger brother had no idea who Karen might have been but that is another name Rea has called out.
5 January 2021
I have gathered enough money together for two months of full-time care for Rea. She seems to be fading very fast now. Current scheduled start is Monday the 11th but I'm not sure I can make it that far. Tonight will tell the tale.
8 January 2021
We got a hospital-style bed installed in the living room yesterday. Rea slept there and I slept on the couch. This is how we'll likely do things until we start 24-hour care on Monday.
9 January 2021
I'm trying as much as possible to enjoy these last couple of days before we go to around-the-clock care. I know it will be different then. Given how sore my back is getting, though, I also know this is needed.
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I think one of the best things about the caregivers is that having them here full time means that Rea will almost never be alone. One of the things I've learned about her over the past couple of years is that even though she's always been a very independent woman, she hates to be alone. When I look back over all the time I've known her, this becomes more and more clear.
The past two years or so that was magnified, likely because of her illness. I think she knew well before she told me that something was seriously wrong.
10 January 2021
Marley is seven months old and this will be the final day I am 100% responsible for Rea for some part of the day. I'm happy to be getting full-time help starting tomorrow, but it's also bittersweet for a lot of reasons. Not the least of which is what it means in terms of her decline.
My back is unhappy, though, so from a physical perspective I just wasn't going to be able to keep this up much longer. Hopefully I can make it through tonight.
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I'm an hour or so away from my final night with it being just Rea and me here. It's weird, at times I feel completely calm and in the moment, and then I'll think about her and how close we are to the end and I have to fight the urge to cry.
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Rea seems to have taken a significant downturn since this morning.
While the caregivers are present, I've been spending noon to five or six down in the basement working on various things and trying to recharge. She was in the bed when I came up. She'd been agitated most of the day. I gave her some leftover mac and cheese and put a paper towel down between the tray and her mouth to catch any spillage. When I came back she was trying to eat the napkin and ignoring the mac and cheese :-(
I hand fed her from there.
11 January 2021
Rea wet the bed this morning. She'd been having trouble going for the past 24 hours or so and I was a little slow getting going this morning, mostly due to lack of sleep.
Full time care started this morning at 9am.
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About now I'm wishing I had more than one Xanax left. Slept poorly last night, can't seem to sleep today during the day.