what a weekend!

He stayed in bed all day Saturday because I was unable to get him out of bed. I did a great job keeping him well fed, a so-so job protecting the bedding from pee, but a pretty lousy job of keeping him clean and changed.

This morning I woke up around 4 and decided to spend the rest of the night in my recliner in the den. Some time between 5:30 and 6am, I fell back asleep. I dreamt that the hubster had awakened and climbed out of bed and was throwing his pissy depends/chux/bedding into the shower(!). When I woke up ~7:30, he had in fact climbed out of bed, peed on the new railing bumper and poo’d on the floor and stepped in it.

I got him to keep still while I sponge-bathed him standing up, then sat him in the wheelchair (against his will so he perched on the edge), washed his feet and got fresh Depends & an inner pad on him, wheeled him into the den, and served him breakfast–one item at a time and let him handle it himself as I gradually cleaned the bedroom floor and bed and started the laundry.

After breakfast of juice (with ground pills), cheerios, and coffee, I got him into his recliner and he fell asleep. So I was able to catch a shower–yay! He’s still asleep holding the plush Guns golden retriever puppy I got him a couple of months ago.

I can’t do this by myself any more. I need to get a better backup plan than I have now, which is little to no backups for weekend help and temporarily no backup for weekday mornings as the backup is home for a few weeks with an injured child (he fell off a climbing pole and cracked a vertebra–keeping a 10-yr-old lively boy still is a full-time job). My end-of-day and Sunday morning aide took a long weekend off, and my Saturday help, who was going to come for 6 hours, couldn’t come at all–nor can she come Monday morning as she has a preK intro event with her daughter.

SO I’m on my own from the time the hospice nurse left after getting the hubster into bed on Friday around 5pm till Jourdan returns on Monday at 4pm. Hospice never provides aides on the weekend and didn’t have a spare aide for Monday morning. The last time I had to handle the hubster on my own on a weekend, it was OK. Just ~a month ago. Not so OK any more.

13 Likes

Guns–>Gund (typo or autocorrect, who knows)

What an incredibly distressing situation. I imagine you must have felt overwhelmed. But to your credit, you plowed through as best you could. And it all worked. Scary and exhausting! And it sure does stress your need for reliable back-up arrangements that are always in place. And perhaps that includes back-up for the inevitable time when a needed back-up can’t make it.

=sheila

3 Likes

SO I’m on my own from the time the hospice nurse left after getting the hubster into bed on Friday around 5pm till Jourdan returns on Monday at 4pm.

So how did things go for those several unpredictable and unsupported days?

=sheila

He had a messy poo Sunday afternoon in his recliner that got into the seams =8-0 What a low point. Monday went better. But I’m re-injuring some joints/muscles/tendons that had been healing since I hired more help :frowning:

Now that I’m back on track with help, there’s another issue. I have nobody between 12:30/1 and 4/4:30pm. This is the time frame when he usually poops now :frowning: he’s not cooperative enough and sits back down repeatedly as I try to clean him (no, i can;t make him lie down in bed to do it or get to the bathroom. He stoops over while I try to prevent him from sitting back down with one arm while I tear off his Depends, trying to catch as much poo as possible, trying to get out wipes one-handed and clean him–sort of–with the other hand and then get fresh Depends on him (it’s worse than it sounds-). I do keep keep wipes and Depends handy in the den. This afternoon he pooed on the new pad I got for the recliner mere minutes after I put it on (tucks in around the cushion–he likes to pull it back out). I got a chux on top of the dirty pad and awhile later he got up and I swiped it out for another pad and chux.

I have to run the washer and dryer so much now–I was caught up on laundry yesterday but ran it twice today–this morning to clean the protective pad on his bed (about half the time it gets peed on despite 2 chux at night) and just now for the recliner pad. sigh. OTOH, my apple watch is pleased about my level of exercise without much deliberate exercising.

At least I accomplished something this morning–I got my paperwork together and got my Real ID (my previous license expires soon). Only took ~2 hrs at the DMV, and I just barely passed the vision exam and got the glasses restriction removed. However, it’s the absolute worst license picture I’ve ever had(!).

6 Likes

He’s also taken to “playing” on the floor around 3/3:30pm most days, often lying down and going to sleep on the floor by the time my aide gets here 4/4:30. But she wasn’t here for 3 days last weekend. Day 1, I arranged for the hospice nurse to come late and she got him up and into bed. The next day he never got out of bed. Sunday I had to call the fire dept.

This Saturday I have no help. Haven’t been able to get anyone alternate Saturday mornings yet. And my late afternoon Adie can’t come till 7:30pm at the earliest on Saturdays. Worse comes to worst, she can get him off the floor then. I may give him dinner at 3pm to be sure he gets it.

Yeah, ideally I’d have help 10 hours/day, but that would be $250/day = $7500/month. Less than Memory Care, but no can do. He shows few signs of being about to shuffle off this mortal coil–this could be years yet.

From a practical standpoint, if he stays in bed then let him. And if he wants to sleep on the floor, let him. Either way he isn’t getting into mischief, he can’t fall if he’s already on the floor, and if he’s in bed…well, he’s in bed. Put the rails up. Probably about the best you can hope for, and no harm done.

Yeah, he needs memory care. A locked ward. But you already know that. It’s a question of making it happen somehow, since you can’t afford it on your own. Hopefully hospice will escalate their services, and you’ll be able to get him in their program.

1 Like

It feels cruel to leave him on the floor even if he’s crazy enough to seem to want it. Even a few hours on the floor leaves marks that take many days to go away. He’s quite skinny now.

I don’t worry about him falling. He’s fallen quite a few times and never gotten anything worse than a bruise or two, other than the 2 times he split open the skin on his head when he fell on it and bled a lot (once was due to a seizure, but he hanse;t had one for almost 6 months). Patients fall a lot in facilities, too. Even good facilities. Unless you pay for a one-on-one 24/7 aide, falls happen. Even with full-time aides–which you don’t get in memory care or a nursing home unless you pay a lot extra, it can happen, but less likely of course.

He can get out of bed when he wants to badly enough even with rails up and the bedding tucked in tight. I bought crib bumpers to keep him from getting his limbs stuck through the rails, which used to happen almost nightly.

He doesn’t need a locked ward. Or a locked house. Or even a locked room! He can’t walk more than a few steps unaided. He doesn’t;t have enough brain power to operate a wheelchair or a walker.

There’s no such thing as escalated hospice services for him. Unless he were to exhibit pain, in which case he’d get pain meds. But he can’t express himself–that’s one thing I worry about. How would I know he’s in pain? The hospice nurse agrees it’s a unique issue with some late-stage dementia patients.

He doesn’t need any more assistance than he’s getting–I’m the one that needs more help as cleaning up his poo is back-breaking–and cleaning up pee on the floor isn’t so great either as I have to squat to sop up the pee before mopping. He never poos in bed. No yet, anyway.

I can’t get an aide early enough to give him breakfast (he typically wakes hungry and thirsty at 6:30-7:30), so except on rare days when he sleeps later, I feed him–these days in bed, waiting for the aide to get him up when she arrives 8-9. On weekdays and alternate Saturdays I have a morning aide still in the house at lunchtime, so while I usually fix lunch, she feeds him. And 6 days a week, an aide feeds him dinner, which I also fix. I like to fix meals, so that part is not burdensome for me.

3 Likes

Even a few hours on the floor leaves marks that take many days to go away. He’s quite skinny now.

Quite skinny now…your conviction that he may have years to live yet doesn’t jibe with his diminishing nutrition. Continued loss of weight in conjunction with illness reaches a point of no return.

Your description of the demands is really upsetting to hear, knowing that you can’t afford the full-time help that you really need. Ideal would be a live-in aide—one from Monday a.m. through Friday p.m., and one from Friday p.m. to Monday a.m.

I wish I had a great piece of advice. I don’t. But know that I care deeply about what you are going through—physically and emotionally. He’s no longer even remotely the guy you fell in love with and expected to spend the rest of your years with. And there must be enormous resentments as well as love and sadness. All very very human and expected. And doing your best to find rays of sunlight in your days. And not knowing how long this will all last.

((((alstro))))

=sheila

13 Likes

(((alstroemeria)))

3 Likes

Quite skinny now…your conviction that he may have years to live yet doesn’t jibe with his diminishing nutrition. Continued loss of weight in conjunction with illness reaches a point of no return.

My mother’s been equivalently skinny for 5 1/2 years, since she broke her hip. DH eats more than she does and also moves around a lot more. I estimate he eats 3 1/2-4 cups of food/day (mixed proteins, grains, produce) and 1 1/2-2 cups of beverage.

Your description of the demands is really upsetting to hear, knowing that you can’t afford the full-time help that you really need. Ideal would be a live-in aide—one from Monday a.m. through Friday p.m., and one from Friday p.m. to Monday a.m.

Yes, upsetting and intermittently hard work, but no, I don’t need full time help. He typically sleeps from ~7pm-7am. I have no need of help during those hours.

I wish I had a great piece of advice. I don’t. But know that I care deeply about what you are going through—physically and emotionally.

thanks :slight_smile:

He’s no longer even remotely the guy you fell in love with and expected to spend the rest of your years with. And there must be enormous resentments as well as love and sadness. All very very human and expected. And doing your best to find rays of sunlight in your days. And not knowing how long this will all last.

He is remotely the guy…he still smiles in response to smiles. He has warm human contact with me and his aides.

I actually don’t resent him. I feel somewhat bitter about my situation, but I don’t regard it as the least bit his fault–just bad luck. And while his caregivers reduce my savings every week, at least I have savings. I know of people who don’t have as much as we do–but still too much for govt help–and are therefore in worse situations.

4 Likes

He is remotely the guy…he still smiles in response to smiles. He has warm human contact with me and his aides.

I never knew him, of course. But I seriously doubt he is remotely the guy you married all those years ago. He can’t be. His brain really isn’t there anymore. Lots of people “respond to smiles”. It’s probably instinctive, in the reptilian brain. Basic friend or foe response. I would bet if you brought someone in that he never met before, and they were nice to him, he’d respond the same.

It is good you don’t resent him. You’re a better person than me. I probably would, and then would feel guilty about it. Because, as you say, it’s not actually his fault. Life just happened to him, and it sucks. I try not to blame people for something that isn’t their fault. “Bitter” is a perfectly reasonable response, so I wouldn’t feel bad about that. Your husband was taken from you, slowly, inexorably, and you had to watch it all. How could someone not be bitter?

Many condolences, and I hope he will qualify for a facility sooner than later, for his benefit or yours. (You said you were having back/joint problems recently from having to manhandle him.) Remember to take of yourself, too.

1poorguy

" Lots of people “respond to smiles”. It’s probably instinctive, in the reptilian brain. "


Are you familiar with the term “crocodile smile”?

Howie52

Once a person is not able to really communicate, the internal thought processes are not
able to be known by others. There may be strong feelings remaining - or not. Neither
observers or critical care providers are privileged to know a patient’s inner thoughts.

Course, this is also true for patients who can communicate.

2 Likes

He has warm human contact with me and his aides.

I actually don’t resent him. I feel somewhat bitter about my situation, but I don’t regard it as the least bit his fault–just bad luck.

So so glad, delighted, to hear you talk about this warm human contact, and that it is part of interactions with him!

When I talked about feeling resentment, I didn’t mean feeling that these changes are his fault in some way. Clearly you know that’s not the case. “Bitter” is a good way to express your feelings.

=sheila

Lots of people “respond to smiles”. It’s probably instinctive, in the reptilian brain. Basic friend or foe response. I would bet if you brought someone in that he never met before, and they were nice to him, he’d respond the same.

Wherever this smile response is coming from—it doesn’t matter. What’s important and lovely is that it happens. At some level—whatever it is—the interaction makes him feel good. And he expresses it in that simple and universal and human language of a smile.

=sheila

3 Likes

alstro: He doesn’t need a locked ward. Or a locked house. Or even a locked room! He can’t walk more than a few steps unaided. He doesn’t;t have enough brain power to operate a wheelchair or a walker.

There’s no such thing as escalated hospice services for him. Unless he were to exhibit pain, in which case he’d get pain meds. But he can’t express himself–that’s one thing I worry about. How would I know he’s in pain? The hospice nurse agrees it’s a unique issue with some late-stage dementia patients.

I am remembering your posts from your Grand Tour of the US trip in your camper after he was diagnosed. You both knew already what was coming. I wish we had known you well enough then to get you to visit us in LA as a part of your tour. You got to relive some memories of your hippy days in San Francisco as a flower child. Personally, I was too old to be a hippy and too young to be a beatnik. (Also too old to be a Boomer.)

Is your reality anything like you had imagined?

(((((Alstro))))))
(((((Hubster))))))

CNC

8 Likes