I get a lot done but I feel like a stream of sludge. I decided today to abandon my childhood piano rather than trying to get it restored. I ordered cleaners and movers. I read a home inspection. I scheduled eight appointments for cardio rehab. I ordered a laundry basket with handles, two tubs to put dad’s other-seasonal clothes in, a large area rug, and $500 of packing supplies. I graded several essays and watched a documentary about Rwanda (the next film is Hotel Rwanda). I took most of the “art” from the walls and transported some of it to Salix. Paid some bills. Threw away two more large sacks of trash. There’s also the things I don’t do anymore, for which I am perversely grateful: wake dad up for his breakfast club, guess what to make for lunch and supper, sort out pills, the complicated laundry derby.
Dad’s been away for a week and I think a lot of the sludgy feeling comes simply from the relief of not being constantly concerned about what I will have done unsatisfactorily. It was also a feature of the last month that every time I thought I was getting somewhere near crying, he would say something to me that prevented it — usually something angry or critical. So it’s a week away and it’s probably normal that I’m getting set off.
This is what did it: Penn & Teller Fool Us is on tonight and we usually watched it together.
Dad was able to transfer from the hospital straight to the assisted living place (I’m going to try to keep calling it “Salix”). This was a huge blessing to him and us. The anticipated argument about living at Salix didn’t materialize because it was obvious he needed to have more professional observation in the short term. That doesn’t mean the aggravation is going to go away, because the second he was in the room he started to pick the main fight about the furnishings of the room that he’d been picking for the previous ten days.
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There’s this weird paradox: his discharge instructions say he’s not supposed to get angry, and also that he’s not allowed to lift anything. So we’re not letting him come home unsupervised, because we couldn’t stop him from lifting stuff, but that makes him angry.
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Ten new meds. Ten. He is still walking unassisted, but never far without having to sit. We we were at his GP’s today (who felt kinda dumb for missing this last Monday). Cardiologist on coming Monday.
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We have been asked twice now if we wish to sign a DNR order. Everyone has an opinion. I don’t know. I don’t feel like it’s a great time to make this decision. Too many decisions.
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I am still feeling under the weather (slightly swollen — is that a thing? — inflamed) from Moderna #2.
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On top of all that a “right” house came up for sale on Wednesday. We had to offer by Monday. We got it. So now at least I am not going to be homeless.
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In principle now everything is scheduled. All the work left is emotional. I am so tired. Severe decision fatigue already. The prospect of the next six weeks continues to fill me with dread.
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I am again going to closer comments, not because I don’t want to chat, but because I don’t think I have the energy to give the replies you deserve. I feel everyone’s positive energy and I am thankful.
Dad went to emergency yesterday in the early evening — anterior STEMI. 99% blockage of the anterior LAD at the dominant diagonal branch. Significant stenosis elsewhere. Balloon and stent. He’s in the hospital (not in an ICU bed) and I will go there shortly.
I was driving back home and was about a half hour away when he began to suffer — his personal care worker was here. She had seen this before — got dad in the car, drove through the road repair construction zone maze, and had him in emergency within fifteen minutes. They saw him (according to her) in 90 seconds after she drove up to the entrance. It’s no exaggeration to say she saved his life; that, along with our (around here) typical “no wait” acute care situation.
Dad was going to assisted living today, or that was the plan.
I’m putting this here as part of the diary mode; and just to say this to someone; I’m closing comments because although I appreciate them, and you, I don’t know when I’ll be able to answer. Thanks for all of your prayers and thoughts — we appreciate them massively.
Today: more stuff to assisted living. I simply kept stressing to dad I was not available for conversations about assisted living. Tuberculin test for him. Then the long trip to the county where I work for Moderna 2. I was listening to news, but the news stations all drop out within about 15 mi of that city and so I was listening to WPR classical. It was kind of a hazardous drive (road repairs already) and I was appropriately tense.
As I parked, this came on:
and I just broke into sobs. I haven’t been able to listen to music in probably a year or so.
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Again with the flags waving us to different cubicles. I told the flag lady I wanted a checkered flag, after all this.
Had to sit for a half hour afterwards due to bee venom allergy. Read about 100 pp of this. It’s really useful, esp the chapters on information overload / internet addiction, and family obligations.
I feel embarrassed that the only time I find to read a book about laziness is in the enforced 30 minutes of still after the vaccination.
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On the way back I decided to stop for a bit as I was feeling woozy. More places are open now (until recently all the fast food dining rooms had been closed) and I stopped at a Jersey Mike’s, and this came on:
That album was on constant loop in my car the summer my mother died. Uch.
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Long uncomfortable talk with HL last night. I had to tell him that if last night repeated itself, I would call the police. Very supportive talk with assisted living place this afternoon. Apparently nothing we are experiencing is unusual. They have the meds list and we set a specific date. Dad just started in on me again about the furniture and I am going to plead vaccination illness and go to bed. At 4:20. I am not lazy. He has a Jersey Mike’s sandwich.
Yesterday we started moving some of dad’s stuff into the assisted living place. Nine years ago I would have found words for this sort of thing. I could have made it poignant, or blunt. Now I am just broken, running on empty, and increasingly wordless. I could tell you the angle of the sun, I could tell you what dad said (it wasn’t kind), I could tell you about driving through the countryside on “the back way” to the assisted living place. There hasn’t been much rain and so the landscape is still brown. I could tell you what it looks like from the window there. I could tell you what dad said there (it wasn’t kind). I could tell you about the geese.
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So many conversations with the same three triangle points: the veneer of rationality; the level of sheer desperate anger (“cornered rat” viciousness); and the possibility in between that he’s consciously or unconsciously manipulating. The geriatric consultant says it’s impossible to tell which, and it’s probably all three (or four). And today we noticed clear attempts by him to triangulated between me and HL.
I simply can’t do this, it’s exposure to the worst possible kind of gaslighting. “I’m rational, and my rational choice is to abuse you.” “I’m not rational, so you may not defend yourself against anything I say to you or about you. You may not even react to me. You must just take it and take it and take it.”
Upside: Forty years ago I would have just taken it. I wouldn’t have understood what was happening.
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This morning was worse. A few more things moved in, and so much anger. There are only so many square feet in that room, and dad has determined to cram every inch of it full. He can’t be told that it won’t fit. If it didn’t involve a huge amount of work to put all this stuff in the place I would just give in and let him manage, but it disrupts the other residents and HL has a hard time accommodating what dad wants.
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This Grandpad is really complicated to set up. After 40 minutes I still can’t figure out how to get a new phone number for dad.
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This afternoon, more running around buying stuff you only notice is missing when you’re there. A bathroom vanity, a cart for towels, a shower curtain, a shower caddy, and a pillow. How could I forget a pillow? Then picking up the stuff I had already ordered yesterday.
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This evening: apocalypse. This is the worst it’s ever been. I don’t know how we come back from tonight.
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Any relationship counselor will tell you that the thing a relationship can practically never recover from is contempt. People can work to, agree to, surmount all kinds of other negative emotions but once contempt is in the picture, saving the connection becomes infinitely harder. Dad has treated me with contempt, off and on, since I was a teenager, and pretty continuously for the last year or so. As a child you always hope and believe that your parent can change, if you can just figure out how to be good enough. And then I was away for a long time and it didn’t really matter what he thought of me.
After tonight, I may finally be at contempt.
It is not ethical to feel contempt for someone who has brain damage.
While I was learning to play the clarinet, Marjane Satrapi was dodging student revolutionaries on the streets of Tehran.
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Watched the end of Howards End (2017) last night. The improbable ending of the story somehow seems more unlikely when you watch it on the screen. But the theme of the house tugged at me. And seeing those gorgeous English summer hay fields made me long for fall (specifically, that scene triggered a memory of September 2006 when I moved to Berlin for the year). I wonder what the fall will be like this year.
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I got an Easter dinner from a local supermarket and it wasn’t bad (and it was the right price — $40 and we got four meals out of it and there are probably two meals left). Dad was generally opposed — to me leaving the house to collect it, to me putting it in the refrigerator, to me warming it, to the time we ate it, to eating it, to the amount of food, to the kind of food, to the cost. I owe myself a post sometime about dad’s general opposition to fuss (this is not new, it’s just more intense now) and my family’s odd relationship to holiday meals. In any case, it’s done. We had a last Easter dinner in this house. At least I noticed it.
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“They” say if a cardinal hangs around your house someone dead from your past is trying to talk to you. If that cardinal is mom, I hope she can find her way to the assisted living facility, at least.
All the furniture dad needs, we now have either in hand or ordered.
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Was at the assisted living place today to drop off some stuff, and met dad’s neighbor across the hall. Tell him, she said, my door is never locked. If he gets drunk and accidentally comes into my room, the door is never locked!
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Today is the first really nice day. When Wisconsin spring starts, it’s usually a mixed pleasure, but today is just really pleasant.
Third, fourth, fifth and sixth days of Passover. I was too tired to write Tuesday and Wednesday I was thinking about April Fools’ and yesterday I was exhausted again. I’m listing that as the first thing.
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A week ago, I rented an airBnb for June and July, as a “just in case” measure. It’s just a room with shared kitchen and bathroom, and it’s 50% refundable before June 1. I also started looking at houses yesterday. I am not a motivated buyer and the local real estate market is in an insane state. Given how uncertain I am that I want to own a house (or even a condo), I lack both the personality or the impulse to participate in bidding wars.
Today I looked at a house on a different part of the same road I grew up on. This is the first one I’ve seen that would be a possibility. I’m not emotionally ready for this step quite yet, although if I’m going to do this I’m going to need to get myself there pretty quick. This house will probably be under contract by Monday at 5 p.m., at 25 percent over asking.
What struck me while I was there: Tthere are seven houses on that part of the street — a farmer sold out in 1970 and a cluster sprung up there. At one time I knew five of the families. Collars, Paschkes, Steeles, Kettners, Blecks (we were kissing cousins to the Blecks, dad did a lot of the work in that house, and if that one had come on the market I would have bought it immediately). Mrs. Collar was mom’s emergency babysitter when HL was little, and I was in school and in church with the Paschkes’, Steeles’, and Kettners’ kids. They’ve all moved away now. Us too, in eight weeks.
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In the last two days, I have also ordered for dad: a twin bed (mattress, foundation, frame, headboard), bed clothes (mattress cover, mattress pads, sheets, blankets), towels (five bath, twenty hand, twenty washclothes), a very compact reclining chair, a wall mount for his Smart TV, and diverse toiletries and other supplies.
Somehow ordering towels online has become really complicated. My decision fatigue is at a near all-time high.
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I still need to get a bunch of things including some new clothes and smaller furniture, but I think it’s going to require me showing dad in person that his current stuff will not actually fit in that room. So HL will have to be involved.
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After the last episode when dad narrowly missed being phone scammed, I decided to try to transition him to a GrandPad. I had resisted it really for two years, even though the caregiver coach felt strongly this step would solve our problems. My main issue was the level of autonomy he’d lose. But the advantage of the GrandPad over the Jitterbug is that the GrandPad only accepts calls from a pre-approved list; additionally, it has an Internet blocking tool and will only go to pre-approved sites. (There are other advantages — it gets along without passwords, so I won’t have to jump in after dad locks himself out of his various accounts on the computer anymore, either.)
All of this is contingent on his willingness to cooperate. Either that, or his capacity to understand. I’m still trying to figure the difference between those things out.
Theoretically, if dad could follow the basic principle of not answering the phone if you don’t recognize the number, he could keep the Jitterbug. (The computer is a separate issue — a lot of the scams he’s fallen into involve him typing something he wants into the computer, taking the price he likes best, and then typing his credit card number in.)
The last episode: We’d watched a news alert on the local news about how people were being hit with a scam where the caller claims to be from Amazon, says that you’ve been charged an astronomical amount, and they’re checking to make sure it’s a legit charge — and then they ask for an Amazon password. Not twenty minutes after we saw the alert, dad got a call on his Jitterbug from just such a scammer. First, he answered it (don’t answer a number you don’t recognize! All your regular callers are programmed into the directory!). Then he said, oh, yes, I’ll get on that, I’ll have to ask my daughter for the password. Then he turned to me and accused me of getting scammed and insisted I give him the Amazon password.
This is the thing that flummoxes me about this kind of situation over and over again — he’s suspicious of my financial activities, but a total stranger calls him on the phone and he’s ready to give away the farm.
I told him it was a scam, and he insisted I needed to give him the password, and I said I wasn’t going to and he should hang up the phone. Eventually, after about three more attempts at convincing me to share the password, he gave up.
The conversation that ensued was not pleasant, and I didn’t lose it but I came close. You need to ignore calls if you don’t recognize the number, I repeated — at least five times. He said that if he did that he would miss important calls. I asked him what important calls he had missed this year because of doing that and he couldn’t name any. Finally I said — if you want to help people steal money from you — be my guest — and I left the room.
And this is another obstacle I fall over again and again. My default assumption is that he’s capable of rationality.He always presents his behavior as normal: I’m the one who’s crazy. He doesn’t have to do what I say.
When we went to look at beds, he got three nuisance calls while we were in the store, two of them while we were talking to a salesperson, and he actually yelled at me to shut up while he was listening to a recording about a car warranty.
It finally hit me: if the phone rings, everything else turns off. He can’t make a rational judgment about accepting a call or not. He can only answer.
I’m not to the point (and can’t imagine I will ever be) where I’d deprive him of a phone just to keep him from being scammed. At the same time, the amount of energy required to clean up after he has been phished (not to mention the money) is non-trivial.
So we’ll try the GrandPad. At least that way, everyone who calls him will be someone known to him and me. As it has a tablet / smartphone set up, I hope he can manage it. We had actually switched him back to the Jitterbug because he had struggled with the smartphone, even before the stroke.
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In the same vein, we’re going to try a pre-paid card debit for him. At least if he falls victim to the scam, the financial damage will be limited (and I won’t have to spend hours on the phone).
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Next week’s film for “History Goes to the Movies” is Persepolis (2007). I found the graphic novel fascinating (Satrapi is six months younger than me, and I remember the Iranian Revolution pretty vividly, as it was on TV every night for months).
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I did not cook for Passover and I will not cook for Easter. I ordered an Easter dinner for two from a local supermarket. I am craving this. Also this, but with Tafelspitz. Next year in _______?
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The testimonies so far at the George Chauvin trial are heartbreaking. If we can’t agree, regardless of our politics, or of the larger political context, that Chauvin murdered George Floyd, we’re really in trouble.
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Dad and I are both deep into the Easter candy already. What’s your favorite? I like just about anything Lindt makes.
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This week Wednesday is Moderna #2. Hopefully the side efAfter April 21: haircut! movies! However, the case counts are creeping up here again. So who knows.
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Dad really loves Penn & Teller Fool Us. We watch it religiously. I find myself oddly fascinated by Teller.
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The 2017 Howard’s End is on PBS on demand, so I’m going to try it. I’m not sure it’s a great idea to be a watching a darama about a house. And my attention span has been more Escape to the Chateau lately. But the music seems to be getting through my shell.
I think we’ve finally got an official explanation for the recent changes to Armitage’s profile — his Twitter header that eliminates his major roles, the weird way that his t-shirts now match his hair color, hiding behind the mop of hair and the ongoing beard — the tattoos and rings in his news role. He’s joining the ranks of a number of actors who’ve felt they were pigeonholed in certain kinds of roles and have consciously changed their brands to get different kinds of roles. Think Robert Downey, Jr., or Matthew McConnaughey. Rebranding was the key to the revitalization of their careers. Experts in actors publicity think this is the way to go and he’s going to be a new case study to show other professionals how it works!
There’s a lot more detail about Armitage’s changes and his future plans in this article at the Hollywood Reporter.
