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wvavet Asked August 2016

What was the point of no return for your parent that required nursing home placement?

I feel my mom crossed that line last night when she ran off my brother who is her primary caregiver (about the fourth time he has left her in two years due to manic behavior?) and was found OUTSIDE screaming her head off by a neighbor at 3:30 a.m. Only thing the ER found wrong is an elevated ammonia level which is not new. Checked for uti which she gets a lot but they said that showed clear. Do you agree her going outside at that hour crossed that line? She can only walk about 20 steps with a walker!

wvavet Aug 2016
Alibobali mom did qualify for home help a few hours a day which we hoped would give my brother at least a small break. Unfortunately mom couldnt tolerate a stranger in the house - crazy incident about possible stolen bread etc. So it was live in brother with me and another brother giving what time we could as she could never be left alone. Very hard on all of us but more important she was fading instead of thriving. Thanks for asking.

freqflyer Aug 2016
08/26/16.... wvavet, you asked when was the point of no return for parent... for my Dad it was when he could no longer go up and down the stairs even with a help of a caregiver. And having around the clock Agency caregivers was expensive.

My Dad had the common sense to know it was time for him to move to someplace safer, so he choose a really nice Independent Living apartment. He was there for 8 months when the Admin/Staff decided he needed a higher level of care. They were right, as Dad was falling more and his memory was really slipping. So he is now in Memory Care at the same complex.

I couldn't be a caregiver for my Dad as I am 70 years old with my own age decline and health issues. Plus my house has worse stairs then what Dad had [I need to downsize here soon]. And if Dad fell, and if I tried to get him up, the EMT's would have two patients.

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AliBoBali Aug 2016
You either JUST NOW posted, wvavet, or I didn't see it before...

Due to lack of time stamp, I'm not sure what happened. I believe you just posted. Very good to hear you've gotten help. :-)

AliBoBali Aug 2016
Wvavet ~ I'm curious about something, but if my question is only "muddying the water," feel free to ignore. ;-)

Your brother was caregiver. Is this in your mother's house? Why are you not considering a compromise where it doesn't have to be either family or a facility, but an in-home paid, trained caregiver? Putting alarms on the doors is easy enough. The caregiver would be alerted if mom tried to get outside in the middle of the night.

Just some thoughts. Best of everything to you and your family.

wvavet Aug 2016
Ms Madge I know exactly what you mean! They were insisting she needed a locked dementia unit because of lewy body diagnosis. THANK GOD someone with sense interviewed her today and figured out she did NOT need that and got her a bed at my first choice of local places instead of one out of state! I am so relieved and bless the guidance of Jeannegibbs who suggested I contact the ombudsman who got us a reconsideration. It took almost three months and another major incident but finally she is in as of a few hours ago. Bless you all for your support.

MsMadge Aug 2016
Wvavet
Please let us know what type of dementia unit you are seeking placement - part of a skilled nursing facility?

The line for me was when my mom was having trouble accepting caregivers into the house and ran outside and fell

We could have managed much longer if she wasn't so stubborn about it -

vstefans Aug 2016
It does make sense, totally...happens that way all the time.

ASusan48 Aug 2016
Keep us posted, wvavet. We've all been down this road in some respect or another. We're here for you.

wvavet Aug 2016
Update - being interviewed tomorrow for placement in dementia unit. She's still going in and out of "normal" mental status if that makes sense.

vstefans Aug 2016
Medical lines - sundowning badly enough to require supervision every night. Getting delirious with minor infections. But even then, Jeanne has it right - those are things that really signal you can't live alone safely, not that you can be managed at home if enough help is available and you accept it. WVAvet, it sounds like your mom cannot be at home if the "help" can still be "run off" at will. She is in no shape to be running that show, and your one brother alone probably can't keep her safe under these circumstances.

pamstegma Aug 2016
wvavet, It is time. It was time as soon as the MD said so. You have to let go.

ASusan48 Aug 2016
Wvavet -
I completely understand. My mom was 76 and had multiple co-morbidities. When she collapsed and went unresponsive at the nursing home, the first thing the nurse at the ER said was, "Oh, she's young!" I'm afraid it didn't help my frame of mind much at the time.

wvavet Aug 2016
Thanks Jeannie, your always spot on with your posts! I really appreciate how much of your time you give to helping others, especially seeing how much you have been through with your mom and husband.
Susan, great insight as well. Yes the ammonia is being treated with lactolose 4 xs a days now...She has cirrhosis along with a number of chronic ailments. So sad shes only 72. The family and her doc have known she needed placement for some time, it's just so hard! But as I said this last is the line being crossed...

ASusan48 Aug 2016
Elevated ammonia level is a warning sign - if that's not a new symptom, I hope whatever is causing it is being treated?

The elderly body doesn't respond the same way a younger one does. A UTI, elevated ammonia levels, or other imbalances in their system can cause serious behavior changes that vanish as soon as the problem is remedied.

However, since you mentioned that she's had behavior issues in the past, maybe the time has come to consider placement - especially if mobility is an issue, as you said she can only go about 20 steps with a walker. With that said, though, I would add that you're the only one that can make that decision - but I wouldn't make it alone. Discuss her situation in all honesty with her doctor - tell the doc exactly what's going on and find out if any of her current medical issues could be causing this behavior. Have a psych eval done if you can, to see where she is in terms of dementia or some other mental illness (since you mentioned this has been an issue for a while). Once you have all the pieces of the puzzle together, then you can make an informed decision on placement.

For me, the point of no return was when Mom fell at home, which led to a speedy uptick in her dementia symptoms and repeated hospitalizations. She couldn't stay home for more than 2 weeks at a time without going back to the hospital for a 3-7 day stay. Every time she went into the hospital, she'd start Sundowning, which caused even more problems, because she would injure herself while Sundowning and not remember what happened. Then would come a stay at the nursing home for rehab and therapy, which she refused to do. I finally had to make the tough decision to keep her at the nursing home, because there was a pattern developing that was just going to lead to her ending up there anyway, and there was a very high risk of her falling at home again - plus, she had developed medical conditions that I was not qualified to care for at home. I tried to keep her at home as long as possible, but it just became too risky to do so.

jeannegibbs Aug 2016
I think the "line" is different in each household. Some of the things I have heard about include:

Becoming incontinent of bowel.
Placing the caregiver at risk through violence or threatened violence.
Making it impossible to keep the parent safe.
Developing severe mobility issues, especially if the parent is heavy and the caregiver is not strong.
The parent interfering with raising the children in the household.
The parent trying to interfere with the marriage.
The parent being combative, argumentative, and just plain nasty.

It sounds like your mother needs more or different kinds of care than you and your brother can provide. When that becomes the case the appropriate and kind thing to do is to find a setting that can provide what she needs.

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