So I decided to see what would happen if I didn’t give him his 3rd olanzapine of the day. He was walking better within an hour. Walked so well, he made it all the way to the toilet the first time he woke up to pee. Unfortunately, he proceeded to pee next to the toilet instead of in it. Big cleanup.
3 hours later, he woke up to pee again. Alas, I didn’t waske up till he was already peeing–onto the bed =8-0 A big one.
While I pulled the top sheet off to wash, he curled up on the bottom sheet, and fell asleep. I couldn’t get him out of bed. So he;s sleeping on the pissy bottom sheet with no covers (I saved the quilt, which didn;t get peed on. Nor did the “protective” 2x3 waterproof pad I’ve been putting on top of him to protect the qilt from pee.
A question occurred to me last night. If it’s none of my business, that’s OK.
When you and he received the diagnosis, I assume he still had most of his marbles. Did you guys discuss it? What were his wishes he expressed to you? Did you guys do any planning?
I know when I thought I had a glioma, I tried to prepare everything for 1poorlady so it would be a smooth transition. Even though I previously offered to show her the finances, she was never interested. But, I think just to humor me, she let me show her after they spotted the tumor. Am I unusual, or did he make similar preparations for you?
I would think you would have talked about a future of dementia, and what he wanted to do.
huh. He woke up around 6am and sat in the master BR doorway for a while, then lay down on the floor and went back to sleep. For hours. Meanwhile I washed and dried the bedding.
Still asleep when my aide arrived at 8:30 and even when I left on errands around 9:15. Got back around 11:30. Aide had showered and dressed the hubster, but meanwhile he had overflowed his Depends w/pee and poo (sticky poo she said–that’ll be a first) and then poo’d some more in the shower(!). Poor Shaina When I got home about 11:30, he was sound asleep in his recliner, not having eaten breakfast or taken the other 2 morning pills.
I cut his fingernails and toenails as he slept–he didn’t flinch. Both overdue, so 3 cheers for that anyhow.
So he slept through breakfast, though I managed to get 2 of his pills into him (one being olanzapine) before he went to sleep around 6:30am.
He finally woke up at 1pm. He needed to pee but was a bit shaky on his legs so I let him pee in the den wastebasket and sat him right back down. Then I quickly scrambled him 3 eggs, which he gobbled up. And gave him 4 pills, which he swallowed after much cajoling and my putting them in his mouth one by one. Shaina brought us homemade banana pudding, and I gave him some for dessert. CHowed down on that as well. Will need to give him extra fiber for dinner after this constipating meal(!). We’re having trout piccata and green beans so I think I’ll make the beans into 3-bean salad or at least green beans almondine.
I sure am glad I didn’t have to deal with his shower & poo this morning. Shaina arrived late due to traffic and had to leave an hour early due to her son’s last day of school (dismissed early). I paid her for the full 5 hours as she had a hard time with him today. I can’t afford it, but when it comes to labor and mgt, I’m firmly on the side of labor even at my own expense
I would think you would have talked about a future of dementia, and what he wanted to do.
You would think wrong. There was no dementia in either family and we never discussed it. He wasn’t able to talk about it even after diagnosis–he was always uncomfortable with that sort of thing–really anything about money other than paying bills, and even that he didn’t like to talk about, or anything about poor health, which he had never previously experienced and was not a topic of interest to him. For the first few years, he blamed me for speaking poorly–that was why he couldn’t understand me. And listening poorly–that must be why I couldn’t understand him. He never seemed to understand what was happening. Meanwhile he was teaching computer science and writing complex code for years(!). Anyhow, we are both conflict-avoidant, and I especially have always had issues with “executive functioning.”
He didn’t really think about what would happen in old age, or if he became incompetent, although he promised to take good care of me forever. Since I was the one with health issues, we always assumed he’d be caring for me rather than the reverse. So I’m doing what he would’ve done for me. I wish I could afford more help, but wishing doesn’t make it so.
Well, maybe I’m unusual. Or more so than we already knew! I made plans for 1poorlady in case I died, or if the surgery had dire side effects (i.e. the tumor was between my speech center and my motor control…only a really skilled surgeon stood between me and not being able to speak and/or control my motor functions). So I got all my ducks in a row assuming the worst was going to happen.
It wasn’t fun, and I could only work on it a bit at a time before I got depressed again. But I did it.
Not everyone is so forward-thinking, organized, smart, realistic. He’s always been very optimistic. whenever there was in issue, he felt it wouod magically turn out well. I guess it used to. He didn’t understand or accept his diagnosis.
ASIDE–share the fun :-/
Right after I started fixing dinner, he had a slimy poo for me, too. And got his hands in it. WHile lying on the floor. I did the best I could without him getting up–he remains prone. I sacrificed a half dozen more wash cloths to the cause, cleaned as much of him and the floor as I could reach (virtually all, judging by the great reduction in odor).
None of my 3 aides are in a position to come to help at this hour. And I can;t ask a neighbor to do this–the ones I know are also old.
Maybe I shouldn’t try so hard to avoid his constipation. I switched dinner from trout to burgers for tonight… Maybe when he smells his burger, he’ll feel like getting up to eat? (That would be No.)
He was very odd today. I hope the hospice intake lady sees that tomorrow and offers more help??? I seem to recall my father got a lot more than 2 hours/week, but that was 20 years ago when Medicare was more generous. And he only used it for his last 6 weeks.
Judging by what the intake lady said on the phone, they’re more used to dealing with cancer patients as she talked about handling pain and nausea, which I do not think are typical of any kind of dementia. Also COPD and heart failure as she talked about providing oxygen.
sigh. If you can’t be a role model, be a cautionary tale…
Rhonda (my original aide) suggested I call the hospice people, which I did, but since I’m not a client yet (intake interview is tomorrow), they won;t send anyone to help. But she suggested I call the Fire Dept. So I looked up the closest station. The chief answered the phone on the first ring (wow, that gives me confidence!), said all 6 trucks are out on calls (yikes!), but eventually someone will come and help us.
My property tax dollars at work!
Of course, he’ll likely end up on the floor again.
I agree. For you, dealing with constipation is better than diarrhea. Constipation should be solid, easier to clean up. Unless it is SEVERE, I wouldn’t worry about the constipation.
The fire department is a good idea. Whenever mom fell while she was in IL, they called the paramedics because they weren’t authorized to help her stand and assess her condition (because it was IL). In AL, we don’t have that issue. So the paramedics should be able to respond for you.
2 firemen came pretty quickly. They picked DH up, got him into his wheelchair, and wheeled him to bed. Where I gave him dinner. Afterwards he got right back out of bed, hung out in the bathroom awhile, then did his usual examination of the bedding until he decided to examine the floor grain and fell part of the way down. Nothing appears broken, not bleeding, and not calling again only an hour after they came, so I gave him a pillow and blanket. He soon had his head off the pillow and on the floor. sigh. He’s sleeping there now, right next to the bed. Probably pee there, too, in a few hours.
He doesn’t have diarrhea. Just regular poo. Not his normal. Maybe it was the store brand kefir we had yesterday. I didn’t like it–and it made my mouth itch.
We’re in the local trauma center (MUSC hospital ER in downtown Charleston).
After eating dinner in bed, he wandered around the master bath and bedroom and eventually crouched/fell down and lay prone. He hasn’t been very respnoisive since (heart and lungs seem fine). Called the fire dept again to get him back in bed, which didn;t perk him up, so they called EMTs. Closest ER suggested the trauma center (teaching hospital, more advanced testing etc).
He’s had the usual tests–ct scans of head and neck, chest x-ray, usual blood work. Awaiting results.
He appears to be sleeping normally, snoring moderately.
The other old guys nearby seem in worse shape (oxygen, urine catheters).
He has pressure point marks from spending so much time on the floor lately
He was supposed to have his hospice intake mtg at 2:30 today. I called to let them know I doubt we’ll be home by then. They have registered him in their system anyway.
If this is the new normal, he’ll spend his life in a hospital bed or wheel chair
He slept through breakfast and pills this morning, but did have a good dinner and pills last night (he didn’t feel like pineapple chunks for dessert, though).
Glad hospice registered him into their system. That’s progress.
Will be interested in any results you care to share with us. Don’t forget to eat. It’s hospital food, unless there is someplace close that is better. But you need to remember to eat.
I had to tell 1poorlady a few times to “go get something to eat, I’ll be fine” while I was in the hospital. She didn’t want to miss anything the doctors might tell us, but I mostly slept anyway (and they wouldn’t tell me anything while I was asleep).
I’m so sorry to hear this. I’m not going to pretend I have any good advice or ideas, other than be sure to take a little care of yourself. Eat and rest when you can, because you need to be at your best to take in whatever info the docs have.
Rhonda (my original aide) suggested I call the hospice people, which I did, but since I’m not a client yet (intake interview is tomorrow), they won;t send anyone to help. But she suggested I call the Fire Dept. So I looked up the closest station. The chief answered the phone on the first ring (wow, that gives me confidence!), said all 6 trucks are out on calls (yikes!), but eventually someone will come and help us.
When my FIL was sick, he would sometimes fall down and MIL couldn’t get him up so she called the fire department (several times) to help get him in bed. They once scolded her for possible keeping them from other missions such as putting out fires, but they came.
Sadly, I do believe this will become his “normal”.
Now that hubster is in the Hospice system let’s see what they can
assist with. Hopefully, it will be more than twice weekly visits to
shower him. He will need to be at home for them to help there although
I do know that some hospitals have Hospice Care Centers that they are
associated with.
You do have some thinking to do and decisions to make. Since it has become
harder for you to manage getting hubster around and into bed (please don’t
say it isn’t all the time to justify not accepting reality) plus his eating
is so/so as far as being able to get him to do it.
I can see a time, very soon perhaps, when the safest place for him may be
in a nursing home situation unless you can get nearly around-the-clock
help. I know you don’t like to accept this as a possibility but it may be
the best for him.
I think you are an amazing caregiver and you have been very loving and
loyal. There may come a time when it is best taken out of your hands.
He’s fine. Just having an acute phase of his chronic condition. I can expect more of the same.
Alas, I had to blow off the hospice intake mtg, and next appt is tuesday. But they will try to get me a hospital bed tomorrow. I will need help moving furniture.
Also I never got the hubster’s drivers license back. Will probably have to drive downtown to get it on one of my aide mornings . In fact, Krystal and I were planning to take him to the DMV for a new ID and to apply for his handicap placard this monring.
We’re home. My aide RHonda met us here to help the still very sleepy hubster get to bed. I just ate dinner–which he slept through. He’s had nothing to eat or drink all day (well, an IV). I tried to give him a sip from my thermos in the ER once allowed, but he didn’t want it. Also he’s had no medicine today, and I have no aide tomorrow and can’t pick up his new prescriptios till Monday (he has one more finasteride, whcih he’ll take tomorrow. Not that close on anything else.
If he were in a facility, he’d be restrained and/or sedated in his bed/wheelchair/recliner all day and night to prevent falls, lying on the floor, getting into mischief, and peeing/pooing wherever. They aren’t staffed for one on one supervision/assistance 24/7.
I kept him in his ER bed by hand when he was awake today. He would’ve climbed out.
If he were in a facility, he’d be restrained and/or sedated in his bed/wheelchair/recliner all day and night to prevent falls, lying on the floor, getting into mischief, and peeing/pooing wherever.
That may be what’s best at this point. That day coming was predictable. Maybe it’s here.
When I got home about 11:30, he was sound asleep in his recliner, not having eaten breakfast or taken the other 2 morning pills.