![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
And the rest of the 2022 in Review
Dec. 31st, 2022 02:39 pmThis was not what you would call a "fun" year for me personally. What follows is a serious downer in all sense of the term and contains more than you may want to read about dementia.( Read more... )We started the year with Jana going on an errand in St. Paul at the tale end of New Year's weekend, sundowning (the kind of general confusion that people with dementia have in the late afternoon and evening) and driving into the hinterlands. She drove through part of someone's corn field (more or less fortunately, it was wicked cold and frozen solid, so no damage done) and getting stuck in someone else's ditch. They called the local police and the one guy on duty in the nearest town showed up. He thought she had a head injury so he got her into his cruiser, seeing as it was well below zero, and got her to answer the phone and talk to me. I wrangled my friend in the more or less nearby town to drive out and sit with her while I got to play phone tag with various in town friends who might have been inclined to drive me out to the wilds of eastern MN on a rescue mission on a Sunday night in the freezing cold. I know a lot of people who spend their holidays in Iowa, just saying. 3rd time was the charm, and Gaea, who really doesn't know me well, leapt forward to help out. J was an hour's drive away, the zipper on my coat busted in the middle of getting into her car, G's headlight burnt out - it was all very exciting. But we eventually got there and the cop, who was as nice as it was possible to be under the circumstances, helped me get a tow truck to retrieve Jana's car. He did report it and her license was tagged, as was right and appropriate; she had been driving earlier in the day before then and did just fine in familiar territory, but apparently those days were done. At any rate, rescued the car and Jana and got them both home (and thanked awesome friends a lot).
Then we had about 2 months of wrangling over her not being able to drive, me hiding the car keys, her finding the car keys and taking the car anyway, etc. At any rate, got what had been her car checked out and tuned up, then worked with another friend to find a buyer for it. Sold it in April, which left her kind of heartbroken because she was aware enough to know that meant no more driving to teach workshops, etc.
There followed months of essentially living with the most obnoxious 8 year old on the planet, constantly bugging me to take her places while I juggled my full time work at home IT contracting gig, which was not a lot of fun, my insane event schedule (see last post), writing, editing, etc. She goes to bed super earlier and is not a lot of fun to have out and about since she no longer remembers most of what she used to like so it makes it hard to socializing (along with the Rona). She kept declining all summer while I got friends to take her out occasionally and a neighbor to come by and take a "class" with her.
Unrelated, but in July, a friend and I got carjacked at gunpoint on our street, which was a whole other piece of "fun." They took my friend's car and both of our phones. He got the car back but the loss of the cash and phones was a definite blow.
By August, it became apparent relying on friends to have enough free time to take Jana places going to work any more, at least not consistently...at which point, the company renting my services decided to cut me loose 2 months early, right before we were scheduled to go to Worldcon in Chicago by train. More assistance from friends and we made it and had a decent time (big shoutout to the folks who helped on that one!).
Wacky hijinx ensued on the way back, but we got rescued by yet another friend (are you starting to see a pattern here?). I scrambled and found another at home contracting IT job that started in October, found her a Personal Care Attendant (PCA) who does companion care (they hang out with your deteriorating loved one and give you a break, among other things), hired a local company to help me navigate the joys of the various systemic problems when your spouse develops something hideous and chronic and hired an eldercare attorney to help with matters financial. I had applied for regular Social Security rather then Disability because I knew she'd get turned down for the latter and I just don't have time to mess around. That started right around the point I got laid off. Which was nice, but doesn't amount to much since J was a self-employed artiste when she was working and is only 62.
So here we are. I would say she's closer to a 5 year old level now. I'm wrangling our finances toward getting ready for spend down - this is when you reduce someone's assets down to the point where they qualify for Medicaid, something we will need because if she has to go into memory care, it starts at around $8k a month if you're paying out of pocket and that's not including the other bills. Her health problems are beginning to get more pronounced and I'm having trouble herding her. I did manage to find a foot care nurse who does house calls, so that was a splendid win. And, as with the PCA, the lawyer, the company that helps me, our monthly house cleaner, all out of pocket. Her family is deeply religious and lives in another state, but they have been sending the occasional check, which is honestly more than I ever expected of them.
What's up for 2023? I'm trying to do the vast majority of the bread winning, the transportation, the cooking, coordinating everything, running the press, teaching and writing. It is, of course, not working and I am rapidly running out of Catherine, so I'm trying to figure out paths forward that don't involve me giving up things I love or things I fear (in which we go live in the car) and it's very grueling. I need to do the next level of planning for the inevitable, which is hard on many, many levels so some projects will have to go on hold or get canceled. I spent 8 years watching my mother decline so I won't say this was a surprise. Before it became obvious that the same thing was happening to Jana, I had seriously contemplated getting a divorce (which may now happen for financial reasons) but Mom kept having crises and that ate all the available emotional bandwidth so here we are. I am not suited to caregiving and I recognize it every single week and it sucks.
I will say that what you hear about finding out who your friends are when the chips are down is pretty damn accurate. Jana was never great about maintaining friendships and most of her colleagues and friends vanished early on. A few stuck around and my friends have been awesome. Some of them take her out on expeditions or come over for meals or help sell her work and the tools she can't use anymore or take me out for meals and let me freak out. Friends, acquaintances and even complete strangers have helped me keep the press afloat by buying books, recommending books, supporting the Patreon, buying Jana's work on Etsy, rescue missions and a whole bunch of other things and I appreciate it so much. My assistant, Alexa, and intern Annie (and her family) have helped out a huge amount with Queen of Swords Press projects and my authors have helped with events too. Jennie took on extra teaching planning and she, Heather and Michael have all worked tables either with me or with our books. I can say quite honestly that I would not have made it through this year without all this help.
At any rate, more bulletins and updates as I have them and thanks for sticking with me/us.
Then we had about 2 months of wrangling over her not being able to drive, me hiding the car keys, her finding the car keys and taking the car anyway, etc. At any rate, got what had been her car checked out and tuned up, then worked with another friend to find a buyer for it. Sold it in April, which left her kind of heartbroken because she was aware enough to know that meant no more driving to teach workshops, etc.
There followed months of essentially living with the most obnoxious 8 year old on the planet, constantly bugging me to take her places while I juggled my full time work at home IT contracting gig, which was not a lot of fun, my insane event schedule (see last post), writing, editing, etc. She goes to bed super earlier and is not a lot of fun to have out and about since she no longer remembers most of what she used to like so it makes it hard to socializing (along with the Rona). She kept declining all summer while I got friends to take her out occasionally and a neighbor to come by and take a "class" with her.
Unrelated, but in July, a friend and I got carjacked at gunpoint on our street, which was a whole other piece of "fun." They took my friend's car and both of our phones. He got the car back but the loss of the cash and phones was a definite blow.
By August, it became apparent relying on friends to have enough free time to take Jana places going to work any more, at least not consistently...at which point, the company renting my services decided to cut me loose 2 months early, right before we were scheduled to go to Worldcon in Chicago by train. More assistance from friends and we made it and had a decent time (big shoutout to the folks who helped on that one!).
Wacky hijinx ensued on the way back, but we got rescued by yet another friend (are you starting to see a pattern here?). I scrambled and found another at home contracting IT job that started in October, found her a Personal Care Attendant (PCA) who does companion care (they hang out with your deteriorating loved one and give you a break, among other things), hired a local company to help me navigate the joys of the various systemic problems when your spouse develops something hideous and chronic and hired an eldercare attorney to help with matters financial. I had applied for regular Social Security rather then Disability because I knew she'd get turned down for the latter and I just don't have time to mess around. That started right around the point I got laid off. Which was nice, but doesn't amount to much since J was a self-employed artiste when she was working and is only 62.
So here we are. I would say she's closer to a 5 year old level now. I'm wrangling our finances toward getting ready for spend down - this is when you reduce someone's assets down to the point where they qualify for Medicaid, something we will need because if she has to go into memory care, it starts at around $8k a month if you're paying out of pocket and that's not including the other bills. Her health problems are beginning to get more pronounced and I'm having trouble herding her. I did manage to find a foot care nurse who does house calls, so that was a splendid win. And, as with the PCA, the lawyer, the company that helps me, our monthly house cleaner, all out of pocket. Her family is deeply religious and lives in another state, but they have been sending the occasional check, which is honestly more than I ever expected of them.
What's up for 2023? I'm trying to do the vast majority of the bread winning, the transportation, the cooking, coordinating everything, running the press, teaching and writing. It is, of course, not working and I am rapidly running out of Catherine, so I'm trying to figure out paths forward that don't involve me giving up things I love or things I fear (in which we go live in the car) and it's very grueling. I need to do the next level of planning for the inevitable, which is hard on many, many levels so some projects will have to go on hold or get canceled. I spent 8 years watching my mother decline so I won't say this was a surprise. Before it became obvious that the same thing was happening to Jana, I had seriously contemplated getting a divorce (which may now happen for financial reasons) but Mom kept having crises and that ate all the available emotional bandwidth so here we are. I am not suited to caregiving and I recognize it every single week and it sucks.
I will say that what you hear about finding out who your friends are when the chips are down is pretty damn accurate. Jana was never great about maintaining friendships and most of her colleagues and friends vanished early on. A few stuck around and my friends have been awesome. Some of them take her out on expeditions or come over for meals or help sell her work and the tools she can't use anymore or take me out for meals and let me freak out. Friends, acquaintances and even complete strangers have helped me keep the press afloat by buying books, recommending books, supporting the Patreon, buying Jana's work on Etsy, rescue missions and a whole bunch of other things and I appreciate it so much. My assistant, Alexa, and intern Annie (and her family) have helped out a huge amount with Queen of Swords Press projects and my authors have helped with events too. Jennie took on extra teaching planning and she, Heather and Michael have all worked tables either with me or with our books. I can say quite honestly that I would not have made it through this year without all this help.
At any rate, more bulletins and updates as I have them and thanks for sticking with me/us.