As for sleeping on the floor, let him. I don’t think it’s doing any harm at this point.
Totally agree. There’s no rule saying sleep is better or safer on a bed. And he’s actually very safe on the floor. He can’t fall. And if he does pitch over if he tried to get up on his own, he doesn’t have far to go and the impact will be minimized.
=sheila
alstro: In a facility, he’d be drugged into snoozing most of the day and restrained 24x7. That’s no life (alas, too many people live it-).
How would someone be restrained? My father spend his last few years in a (locked) “retirement home”. He was totally coo coo, but he stayed in his wheelchair (he was crippled from a broken hip.), so he wasn’t as mobile as your Hubster. He was free to run around anywhere he wanted inside the home - just not outside without supervision. I am sure he may have been doped up at times. But he loved to play dominoes (and he played well), which takes a bit of mental awareness.
How old is your Hubster? You may have told us before, but I exercise my right as a senior citizen to not remember.
You are a marvelous wife-person to him. He is lucky to have you. But I think we (collectively, here on this board) are concerned about you and your health.
CNC
sheila: Thinking ahead… So you’ve already worn out your welcome with the Fire Dept guys, who have advised you that you need round-the-clock help.
My FIL was nominally restrained to a hospital bed, but he sometimes managed to get up and try to walk. He would fall down and call for MIL to help him*. She was too weak to help, so she called the Fire Department. They came,but started to complain after the third visit. But they still came.
Like you, she was totally devoted to his care and well being, but there is only so much one old lady can do.
CNC
*He wasn’t totally senile. He was just a stubborn, self-centered man.
Yes, I spoke with an attorney awhile back.
It’s now $18k/month for round-the-clock care at home ($25/hr x 24 hrs x 30 days–the $15k figure is from last year when a local aide cost $20/hr).
5:30am-5:30pm would cover almost all needs, and at 12 hrs that would be half–$9k/mo. I’m starting to think about it. It would be hard to find someone to come at 5:30am. The hubster’s almost always up for the day by then, though. It’s now 6:20am and I already got him out of bed, changed his depends, cleaned up a poo (he has a soft daily poo now that he’s taking half as much olanzapine!), wrangled him into the wheelchair, settled him in his recliner, and fixed breakfast. Meanwhile he moved out of the recliner so I had to wrangle him back into it. He’s almost done with breakfast–mine has been interrupted 4x already. At least he just peed and poo’d, so might be OK on that score till Krystal comes ~8:30. On less drufgs, he is a little more capable–he put down his waffle plate and picked up his coffee mug by himself–something he hadn’t done for months.
$10k for a facility is also last year’s number. With inflation, I’m sure it’s at least $12k now. I’d need to call my top 3 places to find out.
But the hubster could live for years–we just don’t know. He is physically healthy other than enlarged prostate (and finasteride works for that) and seizures (and Depakote works for that).
I need our savings to generate income for me after he’s gone. I will lose 2/3 of income when he dies (not counting income from savings). I probably won’t be able to afford to stay in my house despite no mortgage. On the SC coast, HO insurance is as much as a mortgage(!).
For those who think my stress will be reduced by getting more help or putting DSH in a facility, I can assure you that the stress will increase greatly if I have to watch my savings dwindle fast. I’m currently spending the money earmarked for travel. When that’s gone (by year-end), the next-car fund goes (not to mention no more travel, not even to visit the grandkids or my besties). Then it’s income-generating investments. All savings are accessible–they’re in mutual funds and bonds, all of which can be sold.
As for sleeping on the floor, let him. I don’t think it’s doing any harm at this point. As long as he’s not wandering around (potentially falling), he’s relatively safe. If he parks on the floor, it’s not going to hurt him.
Actually it is harmful, and I was chided by the EMTs and ER for letting him sleep on the floor a couple weeks ago. However, he slept on the floor 2 nights ago and I didn’t get help. When he woke up in the morning, he got right up. He just didn;t want to at 1am when he parked on the den floor (he had fallen asleep in his recliner before I put him to bed and then moved himself to the floor–he didn;t fall or anything. On fewer psychoactive drugs, he’s less likely to fall than before).
In terms of hubster no longer being under the care of his neurologist because he’s in hospice, I came across a hospitce-related blog that refers to this as a very common misunderstanding. The rule actually allows Medicare reimbursement to one non-hospice physician whose care is related to the diagnosis requiring hospice.
I know. I asked his neurologist what he wanted to do, and he preferred to bow out and be available for consultation.
I don’t really need a neurologist any more. I make my medication requests of the hospice dr, and so far, he listens (I communicate w/him through the hospice nurse).
He was free to run around anywhere he wanted inside the home - just not outside without supervision. I am sure he may have been doped up at times. But he loved to play dominoes (and he played well), which takes a bit of mental awareness.
With freedom, my husband pees anywhere, including on walls, furniture, and people as well as the floor. He also touches people. He would definitely not be given freedom!
How old is your Hubster?
73 (and I will be 73 later this summer).
You are a marvelous wife-person to him. He is lucky to have you.
thx <blush!>
But I think we (collectively, here on this board) are concerned about you and your health.
I’m certain I’d be more stressed watching my savings dwindle fast :-/
Forgot to mention that my house is probably worth $650k and has no mortgage. But I’d just have to buy or rent another house/apartment, and in case you haven’t noticed, they’ve become mighty expensive! I don’t have valuable antiques or jewelry or anything. Even my car is 14 yrs old. I do have some nice furniture and contemporary art, but as you know, that stuff’s rarely even worth what you paid for it.
The hubster dozed off after breakfast, but woke up and pulled his depends off one leg and is trying to keep it on the other while pulling it over his head. He’s not only strong, but still flexible(!). Both amusing and annoying. This depends were fresh this morning. He slept through a pee last night–slept from 5pm to 5:30am. He partially woke up a couple other times, but I ognored him and he went back to sleep. Oh yeah…once he started climbing out of bed, and when I went over to help him, I noticed his eyes were closed…vivid dreaming?!? I guarantee he’d be restrained in his bed/recliner/wheelchair all day in a facility. He’s a fall risk.
But the hubster could live for years–we just don’t know. He is physically healthy other than enlarged prostate (and finasteride works for that) and seizures (and Depakote works for that).
I used to agree with you on that assumptiom—back in the days when he had energy, and gladly went walking with you every day, went on errands with you regularly, etc. But I no longer see that as realistic. He has been completely sedentary for a while now. The consequence of this is steadily increasing weakness and frailty. In line with this, his neurologist put him in for hospice care. A patient is not eligible for hospice care unless he/she is not expected to live more than 6 months. And when the hospice nurse came to evaluate hubster, she did not disagree with that evaluation.
It is likely just a matter of time till he falls again—and then again. And each one holds life-threatening potential.
I don’t like writing this post. It makes me feel kind of mean to harp on this reality. But I feel it’s critical that you let go of the comforting sense that hubster is basically physically healthy and could live for years. Yes, in terms of the very modest list and nature of the meds he takes, he’s not high risk for a fatal cardiovascular incident, etc etc. But looking at his overall situation at this point, his health has declined dramatically and will continue to decline.
Sending you big hugs!!!
=sheila
alstro ~
I asked, specifically, if you had spoken with an elder care attorney about getting the ball rolling for Medicaid approval. What needs to be done so that, if he survives, he could be a participant in Medicaid?
Yes, I spoke with an attorney awhile back.
Okay, so what did the elder care attorney say you needed to do? You have not answered the question. My goal isn’t to bug you but make you aware of options out there and the ability to proceed.
I encourage you to get right on calling the top three facilities to see what options you have.
With freedom, my husband pees anywhere, including on walls, furniture, and people as well as the floor. He also touches people. He would definitely not be given freedom!
Is peeing anywhere he wants a positive thing? It seems he might be acting strictly from a base instinct and has no idea of what is appropriate nor the work involved with you having to be aware of the sound of peeing and cleaning up constantly. I certainly am glad that he is in Depends which are of some help.
I’m certain I’d be more stressed watching my savings dwindle fast :-/
Divorce him and make him a ward of the state. I know that would be very wrenching, but it also may be for the best for all involved.
Forgot to mention that my house is probably worth $650k and has no mortgage. But I’d just have to buy or rent another house/apartment, and in case you haven’t noticed, they’ve become mighty expensive!
This is great news! If you sold your home you would have to rent an apartment but, let’s say, you cleared about $600k after a 6% agent fee plus some other fees or repairs. Let’s say you rented an amazing apartment for $2k/month and then add utilities totaling about $300/month. I am guessing about the costs but the positive thing is that you are not responsible for any repairs or replacements of appliances, etc. You no longer have to pay property tax or homeowner’s insurance. If a great apartment costs less then that is just a bonus for you. Personally, I think that there comes a point where being responsible for constant maintenance and replacements is more trouble than it’s worth.
Of course, I have no idea what the cost of living is in your neck of the woods but I would think you could spend $2500/month (would that be an amazing apartment?) and you could rent for 240 months (20 years) with the balance. You could also take $400k of the house sale proceeds and work with an excellent financial planner (please make sure he/she is a fiduciary) and get yourself an annuity which would pay you a guaranteed monthly sum to augment your Social Security or any other income you have. If you choose the right annuity then you could have any unused balance go to a person or charity of your choice. Many annuities will provide for you even if all the annuity money is depleted. That is the kind I have. I also get an update on the annuity anniversary month and have gotten increases for the past two years. Those remain even if there is a loss of the investment. It is only positive for me. It can only go up and never down but I do feel secure knowing more than my needs are taken care of.
I bet you could create a budget that included money for travel or another car. That is what I do.
Let me know what you think.
Robyn
He actually moves around a bit–far more than my mother does, for example. He walks (slowly-) around the den, great room, and hall in the afternoon from a little to a lot. Today the cleaning ladies came and he walked onto the back porch and then back through the kitchen to the den (much prodding required to get him back in the house-). Gets down on the floor and back up again multiple times a day without help (plenty of people our age can’t do that!). If he were bed & chair-ridden, I’d agree he’s a near-term goner. Everyone who’s taken care of him, even in ERs, is surprised at his strength (and will!). He doesn’t act like someone who’s given up. His eating goes from refusing meals to chowing down with gusto. He sure loved the tortellini & spinach soup I made yesterday.
He washed his own hair in the shower today (aide repeated) and usually more or less dries himself (needs help drying his back and feet).
He sleeps about the same amount as my mother (similar hours, too) who’s 96, bed/chair-ridden but in good health. She’s almost always dozing when I visit.
I was just picturing my grandchildren visiting in a few days…they will surely play with his hospital bed when he isn’t in it(!). I hope they won;t be tempted to imitate peeing in a wastebasket…
Most of “our” money is actually his (I can’t steal his IRAs). I would be worse off if we divorced. Also my kids aren’t his kids (he’s my 2nd husband and as there was a first husband with whom I had shared custody, the hubster didn’t/couldn’t adopt my kids)–so he can’t just give them his money either. That was my understanding of what the lawyer said.
You can’t get a nice apartment for $2k here–I’m right next to Charleston SC and the beaches at Isle of Palms and Sullivan’s Island. My brother pays $2200 (plus utilities) for an adequate apartment here. It’s dark because he’s up against the woods and on the first floor. He said I can move into his second bedroom any time. It would be depressing but doable. I love my brother, but he occasionally uses illegal substances and watches tv loud from 10am to 2am. The kitchen is dark, appliances low-end. I’ve lived in worse places when I was a young adult, but it’s easier when you’re young. Small 2nd bedroom, cramped 2nd bath (5x8). LR already crowded w/bro’s furniture designed for a larger room.
As soon as I get my new stove I will have replaced all appliances in my house over the past few years. Also the HVAC units. And refaced the kitchen cabinets. I should have the roof checked over the next year–no problems I’m aware of but it’s 20 years old. I’ll ask my handyman to check it–he has no axe to grind as he doesn’t replace roofs, just the occasional shingle for customers.
I was out of the den putting away laundry when DH stood in front of the den wastebasket and started peeing into it. Not much got on the floor. Wish he felt the same affinity for the toilet! Maybe I should get a charcoal gray toilet shaped like the wastebasket!
As usual these days, he woke at 4:30am having already peed his Depends but still holding himself and trying to pee. I tore off the wet Depends and went to the bathroom closet to fetch a new pair (note to self: keep a pair handier in the bedroom-). He pooped on the floor just as I arrived. So I went back to the bathroom to fetch wipes. When I got back he’d added to the pile. Easy cleanup. Poo was as usual, formed and dense but soft–but alas, clogged the toilet(!). I should’ve broken it into pieces but these wipes are kind of small for that task, unlike the ones in the guest bathroom.
Tucked him back into bed, but I’m wide awake. He slept from 5:30pm to 4:30am (yay!). I slept from ~11pm to 4:30am (yay).
Without the hospital bed, he’d most likely be wandering around the bedroom playing with the bedding now. Instead, he’s going back to sleep.
In what way is it harmful? People have slept on floors since humans became humans. Note that Sheila also agreed with me. He can’t fall if he’s already on the floor.
Sounds like the hospital bed is making life a bit easier (or at least containing where he relieves himself, mostly).
As far as money, since he is incompetent, I’m assuming you have control of that money. I would liquidate anything solely in his name. (Disclaimer: not a financial professional, consult one plus a tax person, etc.) Put it in a joint account so there would be no issues accessing funds. Then you can divorce him, get half, and make him a ward of the state. (Again, not legal advice. Just speculating how to get around the issue you raised in another post.)
You might find it easier to stay in your home, especially in terms of housework and chores, if he wasn’t messing it up constantly. At this rate, you’ll have to apply for assisted living your-own-self because of the toll caring for him (and your mom) has taken on your body.
BTW, given his age, RMDs should have kicked-in. Adds a wrinkle, potentially.
And in divorce, I believe since you were married for more than 10 years, that you have the option to get his SS payment instead of your own. Again…consult a financial pro. There are several at TMF (e.g. “aj” on the Retirement Investing board), and I think some are showing up on the Discord board (including aj).
I encourage you to get right on calling the top three facilities to see what options you have.
Second the motion. It won’t hurt to get the facts. (I sense that you are working on your fears rather than on facts?) Go visit (Take him with you?). Maybe they will offer helpful suggestions.
I asked my sister about Dad. Here is what she had to say: "Dad had vascular dementia. We put all their assets into Mom’s name and then set up a trust to hold all the assets until dad passed away. I had a lawyer to set everything up This was his specialty "
CNC
Yes, RMDs have started.
I can’t steal his IRAs, but I should start taking RMDs out for both of us monthly to help pay for his aides instead of at the end of the year like I have been. I hate to imagine the taxable event if I liquidated his IRAs all at once!
What’s funny is that we’d have no trouble affording IL for both of us. In fact, that was my plan when we turned 75–or sooner if we were flagging/I got tired of cooking. (Well, I AM tired of fixing breakfast at the crack o’ dawn! Hee used to fix breakfast for both of us in the good ol’ days. Oddly I don’t mind cleaning up his poop…I’ve raised kids and also worked as a nurses’ aide.)