Older parents-WWYD?

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Originally Posted by old goat

My mom died in her sleep about 10 years ago. She'd had a few bumps along the way--starting with TB as a kid, before drugs for it and again after my younger brother was born. A broken pelvis and another hospitalization I forget what for, but she was at home and seemingly OK when she went to bed and didn't wake up. Wish I could ask her how she managed it. Dying doesn't scare me. A stroke does. Thoughts for KQ and GL.

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My mom died sitting in a chair reading a book. When nobody could get in touch with her for a few hours my brother went to the house to see what was wrong. When he walked in there she was just sitting there and he thought she was sleeping so he tapped her shoulder and she flopped over. Dad was in the hospital so he called me first and he sounded kinda fucked up... I'll always feel bad for him that he had to be the one to deal with that on his own.

It was weird, I think I knew she passed but didn't read the sign I was given. I was driving my daughter to a mt bike race and right about sunrise a Raven flew in front of the car and hovered over the center of the windshield at 60mph for a minute. I slowed to about 30mph in the middle of the highway amazed at this thing and it turned and looked right at me, dipped its wings in both directions and lazily floated away. I was a little shaken but passed it off as I accelerated away. Maybe a minute later as I was sitting there trying to figure out what just happened I saw a cop start moving, looked down and realized I was moving at a pretty good clip and of course I was being pulled over... When I stopped I realized I had missed the exit which sorta sucked. It was also the only race of her 4 year NICA adventure that she wasn't on the podium.

So I went down to see dad yesterday and I don't think he's as bad off as lil bro and the nurses are saying. Yeah he's tired and wiped out but when you just lay in bed for weeks and don't do shit for yourself that's gonna happen. When we walked in he was eating pancakes and was full of sarcasm and distaste for the world. IOW, normal. He gets confused more easily than he used to but so do I, he looks gaunt and worn out but I think that's mostly because he's checked out and doesn't care about much anymore. Why do I think that? Because he straight-up said so a couple of times. IMO when you give up upstairs the body follows, in this case I think he wants it to follow more quickly than it is which kinda sux but if that ends the discomfort, so be it. Because he's checked out I'm having a hard time being as emotional as people seem to think I should.

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Originally Posted by gravitylover

Because he's checked out I'm having a hard time being as emotional as people seem to think I should.

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I've watched my whole family die. My brothers in 72 &74, Grandpa in 83, Dad in 86, Grandmother in 2002. My mother is 92. I will be sad when she dies but not surprised nor will I feel bad for her. 92+ is a good run IMO. Is that wrong?

I read that article I posted above and they talk about ppl who are 94 and older dying and how it was someone's fault for moving them from one facility to another (transfer stress they call it). That may well be but they were 94+ and in a nursing home. You can't live forever. Maybe there's something wrong with how I see these things but I think a death at that age is to be expected. What do you all think?

My uncle was a lawyer. After he moved to California later in life he worked into his eighties with a bunch of 20-30 somethings editing state supreme court rulings. Then he wound up in a board and care home, developed a bed sore and wound up in Stanford Hospital. We visited him shortly before he died. A young neurologist came in and asked if he could examine him. My uncle said no. The doctor said "But Mr. Roberts, when I came by yesterday you said I could examine you today." "That cannot be proven."

When my mother and brother visited my grandfather and found him sitting in a chair, dead, they did CPR. I hope no one does that to me. (Probably no one will visit me so it won't be an issue.)

92 is a great run. So no, not wrong.

I think I don't want to live in a nursing home at 94, hanging on. But when I am 93 I might feel differently.

Aging is so weird.

About the only thing I know for sure is I don't want to go the way these two old guys are going. When my time is up it's up, none of this laying around waiting for my body to crap out. I don't know how it'll go down but it'll be a lot quicker than this.

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Originally Posted by old goat

My uncle was a lawyer. After he moved to California later in life he worked into his eighties with a bunch of 20-30 somethings editing state supreme court rulings. Then he wound up in a board and care home, developed a bed sore and wound up in Stanford Hospital. We visited him shortly before he died. A young neurologist came in and asked if he could examine him. My uncle said no. The doctor said "But Mr. Roberts, when I came by yesterday you said I could examine you today." "That cannot be proven."

When my mother and brother visited my grandfather and found him sitting in a chair, dead, they did CPR. I hope no one does that to me. (Probably no one will visit me so it won't be an issue.)

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before I went to court last Tuesday,
I wrote Do NOT resuscitate across my chest with a Sharpie -

I am ( upset. Not my preferred word )
... I am ( upset ) that it washed - away in the shower -

Dad died alone -
his 'daughter' three miles away(,) told the staff to 'make him as comfortable as ( they could) '

F.


I hope I walk away while I can. (!! )

KQ ! + More vibes+ for You and your Mom ! !!

peace, my friends. !

skiJ

Older parents? Send them to Appalachia.

https://www.msn.com/en-us/money/real...ia/ar-BB1jOoyr

Or California's verson of Appalachia--the foothills. Until they get burned out. (The real kind of burn out.)

So I suspected for some time and it was confirmed last night that my mother is experiencing Sundowners Syndrome.

Got a call from the rehab place she's in for her stroke that she was wandering into ppls rooms and being combative. They put me on the phone with her and she proceeded to tell me there was a man there that wanted to give her a necklace and tighten it too tight because evidently she'd found out something she wasn't supposed to know and I needed to call 911.

Ugh.

She sounded totally insane but at the same time was speaking quiet clearly and concisely (something that often happens to dementia patients shortly before they die).

Absolutely no dementia or alzheimers in her family with everyone living to 100+

Yeah that's what's happening to my dad, he was quite forceful and clear the other day but it was nonsense mixed with paranoia and conspiracy theories. No history in his family either. I sure hope this ends soon for him, the thought of years like it's been with my FIL (7 so far) is horrible.

Vibes KQ.

People with dementia can sundown but so can older people without dementia. Many sundowners go back to their previous, non-demented status when they can go back to their familiar home and be around familiar people. My experience is with inpatients in acute care hospitals but I would expect the same thing would apply to people in chronic situations, once they become familiar with the place, the people, and the routine. I hope that's the case with your mom.

The classic example of temporary dementia is Jerusalem sydnrome--previously mentally normal people go to Jerusalem and become deluded that they are biblical characters. The treatment apparently is two weeks of inpatient psychiatric care after which they are supposedly mentally normal and never go on to further mental illness. There's also the Gaza syndrome, where you think someone is trying to bomb your house with you in it, but this is apparently not a delusion.

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Originally Posted by old goat

...found him sitting in a chair, dead, they did CPR. I hope no one does that to me.

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DNR/Comfort Care/MOLST and make *sure* that no one does it to you, if thats what you want

Ugh.....

It's sundown and I just got a call from the rehab facility. She's pulling her call button out of the wall. She's called 911 and refuses everything they suggest saying she doesn't know what she wants.

I talked to her and she was pleading with me to come (I was there this afternoon for several hours as I do everyday) but I Iive out of town and have trouble driving at night so I declined telling her that she had all the help she needed there and to let them help her. She said okay but qualified "within reason."

This is no way to live.

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Originally Posted by KQ

Ugh.....

It's sundown and I just got a call from the rehab facility. She's pulling her call button out of the wall. She's called 911 and refuses everything they suggest saying she doesn't know what she wants.

I talked to her and she was pleading with me to come (I was there this afternoon for several hours as I do everyday) but I Iive out of town and have trouble driving at night so I declined telling her that she had all the help she needed there and to let them help her. She said okay but qualified "within reason."

This is no way to live.

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Sorry, KQ.

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Originally Posted by KQ

Ugh.....

It's sundown and I just got a call from the rehab facility. She's pulling her call button out of the wall. She's called 911 and refuses everything they suggest saying she doesn't know what she wants.

I talked to her and she was pleading with me to come (I was there this afternoon for several hours as I do everyday) but I Iive out of town and have trouble driving at night so I declined telling her that she had all the help she needed there and to let them help her. She said okay but qualified "within reason."

This is no way to live.

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Not medical advice.... did this just start? If so, is she getting sick? Hopefully, the facility is working her up for possible infection... UTI, etc.... that'll cause the elderly to get wacky.

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Originally Posted by Diamond Joe

DNR/Comfort Care/MOLST and make *sure* that no one does it to you, if thats what you want

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I wouldn’t count on that working. It didn’t for my mom. Ambulance crew just ignored it.

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Originally Posted by m2711c

I wouldn’t count on that working. It didn’t for my mom. Ambulance crew just ignored it.

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Really? That's fucked up.

yeah, she was seriously pissed off when she woke up in the hospital. turned the quick exit that she was hoping for into a slow painful two week ordeal. the ambulance was dispatched from the same hospital that my mom was a patient. they had the DNR in her records, so they knew before they went. she also had them plastered all around her condo. on the front door, the refrigerator, the counter, the mirrors... and they still went ahead and intubated her anyway.





on the upside, i got a chance to say goodby and to be there as she left...

Sigh. Sorry dude

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Originally Posted by m2711c

yeah, she was seriously pissed off when she woke up in the hospital. turned the quick exit that she was hoping for into a slow painful two week ordeal. the ambulance was dispatched from the same hospital that my mom was a patient. they had the DNR in her records, so they knew before they went. she also had them plastered all around her condo. on the front door, the refrigerator, the counter, the mirrors... and they still went ahead and intubated her anyway.





on the upside, i got a chance to say goodby and to be there as she left...

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:frown:

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Originally Posted by m2711c

I wouldn’t count on that working. It didn’t for my mom. Ambulance crew just ignored it.

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My mom was absolutely paranoid about this in her last few years. Carried a laminated DNR doc in her purse, kept one in her car, etc. Upon a trip to the ER, the very nice doc said something along the lines of "those rarely work in actuality."


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Originally Posted by The Reverend Floater

Upon a trip to the ER, the very nice doc said something along the lines of "those rarely work in actuality."

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Well the hospital wouldn't want to lose out on any billings

Wonder if they could be sued for pain and suffering?

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Originally Posted by evdog

Well the hospital wouldn't want to lose out on any billings

Wonder if they could be sued for pain and suffering?

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That's bullshit. Every hospital I've ever worked in has been good about honoring DNR's. But EMT's and paramedics are too low on the totem pole to feel comfortable letting someone die after they've been called--and why were they called? There are plenty of greedy hospitals but keeping someone alive who has a DNR just to collect -- they're not that greedy. Besides, most DNR's are medicare and traditional medicare pays by the diagnosis, not by the day and services rendered. Keeping a dying patient alive is a great way to lose money. If the patient is Medicare Advantage the insurer isn't going to pay for keeping someone with a DNR alive.

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Originally Posted by old goat

That's bullshit. Every hospital I've ever worked in has been good about honoring DNR's. But EMT's and paramedics are too low on the totem pole to feel comfortable letting someone die after they've been called--and why were they called? There are plenty of greedy hospitals but keeping someone alive who has a DNR just to collect -- they're not that greedy. Besides, most DNR's are medicare and traditional medicare pays by the diagnosis, not by the day and services rendered. Keeping a dying patient alive is a great way to lose money. If the patient is Medicare Advantage the insurer isn't going to pay for keeping someone with a DNR alive.

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Yeah, I believe he was referring to the chaos of EMTs, etc, who often are in the position that dictates the game. I have friends who are emts and I don't envy them one bit.

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It's looking like there's gonna be some unfinished business between me and my dad. I think we're in the last few days now, he's in a hospice center and only receiving painkillers. The Dilaudid has him totally knocked out and uncommunicative so the stuff I didn't say to him because it would've hurt will likely stay unsaid. It's eating me up even though I know I did the right thing.

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Originally Posted by gravitylover

It's looking like there's gonna be some unfinished business between me and my dad. I think we're in the last few days now, he's in a hospice center and only receiving painkillers. The Dilaudid has him totally knocked out and uncommunicative so the stuff I didn't say to him because it would've hurt will likely stay unsaid. It's eating me up even though I know I did the right thing.

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+++Vibes+++

There will probably come a time when you will tell him these things. And a year from now you may tell him again. Don’t let this eat you up too much.

And vibes as you go through this last stage.

The stroke my mother had at the beginning of March has sent her into dementia and it's apparent she will not be able to return to her assisted living situation. She has become incredibly cruel to me saying horrible things about how she feels about me and claiming I caused her stroke, that I laugh in her face all the time etc. etc. It is getting very hard for me to visit her (I've been going every day).

I'm now having to consider where to move her (she's in rehab now). I could spend thousands to keep her in a memory care facility attached to where she is now (where she's lived for the last 15 years) or I could get her on Medicaid and leave her where she is which is basically a waiting room for death. It's clean and the staff are numerous and kind but it's dismal.

There is another memory care in town that takes Medicaid that I can look into but I have to get her approved first.

My question to all of you: do you think it matters where she lives aside from care? At the memory care I would have to pay for she would have a nice room to herself. Where she is now (a skilled nursing facility) she would share a small room with someone else where the beds are barely 8ft apart. I assume the medicare memory care would be the same but I don't know.

I have some concern about moving her as she has previously exhibited signs of "transfer trama" when she moved from rehab back to assisted when she broke her pelvis in October. She has left neglect which cuts her world in half and makes her confused and she has started wandering even trying to exit the facility (she uses a wheelchair and drags herself around with her feet but her brain no longer recognized anything left of center so it's a problem). She can no longer read books and the TV control confounds her even though it only has an "on" button and up & down for channels and volume.

Death would be such a mercy. This is horrible.

So sorry.

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do you think it matters where she lives aside from care?

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No, not really. Do as much as you can but please take care of yourself as well.

Gosh KQ, so sorry. I hope you have some stress relief for yourself, either available or planned.

If it were me, I don’t think I’d want to live with the frame of mind she’s slipping into and I’d want to pass as quickly as possible, but that’s too easy for me to say. My mom had dementia, and it was super-tough on us kids. But we laid down the bucks for the more pleasant options…it didn’t seem to matter to her at all though.

Vibes KQ. No good answers or easy solutions. As bunion said, first and foremost take care of yourself.


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Originally Posted by KQ

T This is horrible.

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Originally Posted by Bunion 2020

Do as much as you can but please take care of yourself as well.

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Originally Posted by Meadow Skipper

. But we laid down the bucks for the more pleasant options…it didn’t seem to matter to her at all though.

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Agree with the above.

Our "less enlightened" ancestors had kinder ways to ease people out of this world. I'm old enough to have seen a little of that.
One thing to consider in where she lives is whether the faciltiy seems amenable to things like no antibiotics, no tube feeding, no transfer to acute care hospital, no resuscitation--if that's what you want for her. Try to get a sense of that if you can. The advantage of keeping her where she's been is they know her, they know what she was like before the stroke, and will naturally have more empathy for her and her severely diminished condition.
Best of luck with this,

KQ--mt opinion--it does not matter where she is as long as the care is humane. The trappings of "nice things" are lost on her now. Don't break yourself financially, you have many years left to live and you will need that money. She doesn't. Limit your visits and don't feel guilty. Wear earplugs or ear buds when you do visit. Smile and nod. It's hard to listen to that mean talk, even though you know it's not really her talking. Sorry you are going through this.

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Originally Posted by KQ

My question to all of you: do you think it matters where she lives aside from care? At the memory care I would have to pay for she would have a nice room to herself. Where she is now (a skilled nursing facility) she would share a small room with someone else where the beds are barely 8ft apart. I assume the medicare memory care would be the same but I don't know.

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Every situ is different but not really, they are somewhere else

if there are other patients in the same room there are more nurses in the room more often checking on all of them which might be better than a patient being all alone in a room

as I remember they will give you the single room when the time is near

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Originally Posted by yeahman

KQ--mt opinion--it does not matter where she is as long as the care is humane. The trappings of "nice things" are lost on her now. Don't break yourself financially, you have many years left to live and you will need that money. She doesn't. Limit your visits and don't feel guilty. Wear earplugs or ear buds when you do visit. Smile and nod. It's hard to listen to that mean talk, even though you know it's not really her talking. Sorry you are going through this.

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I mean, I generally agree but said trappings often DO matter. Even in the final months of my mom's dementia, she was adamant about certain things and certainly aware. And if things weren't as she wanted, she'd obsess or worse. That's the ironically awful thing--it only erases parts of them...much of them remains the same to remind you of how wonderful they were.

KQ, do what you feel is right. Oddly, you'll never regret that stuff either way as in retrospect, it was the rest of her life that you'll hang on to.

I recommend reading up on how to interact with demented folks. There are some basic tips that were really, really helpful.

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One of the worst parts of dementia is the meanness and paranoia. Some of the things my FIL and my dad have said to us is truly horrible. There's no sugarcoating it, IT SUCKS.

Hey KQ - sorry to hear about the changes in your mom’s situation. My wife is a home health therapist that works with stroke patients a lot. She says that those SNF’s can vary in quality, but if they are giving her good care there’s little that would be different in memory care. She says save the money. I don’t know enough to have an opinion, but I empathize because it would be tough to see your mom like that. Thoughts and prayers.

Oh and today my FIL started having problems swallowing. Is it wrong that I'm looking forward to them passing?

IMHO, no.

Oh man just reading this thread now. Vibes to you both. As many have said, you’ve done so much for your parents and you’ll continue to go the extra mile but take care of your selves too. Hang in there , in my thoughts both kq and gl.