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CLR1962 Asked November 2023

Am I in trouble?

My mother, 89, who lives in independent living has moderate cognitive impairment. I am her SOLE care provider and spend 25-30 hours a week with her now.
Recently she suffered dehydration on a walk causing her confusion and she got lost. She got home fine but the home demanded she have 24/7 supervision from that point forward due to liability. So I moved her to our house where she lived with us for over a month while we found new housing. She wandered again while at our house shortly after the first incident so I took her to the doctor where she was diagnosed with a UTI. Upon her completion of antibiotics, we looked at MC units. Two other facilities said she was not ready for memory care and chalked it up to an incident and not an ongoing problem. She knows what she did wrong ( walked by herself) and seems back to her previous state. But now that she’s had one UTI undoubtedly others will follow. I can’t lock her in at night. That’s illegal. She will be miserable in a locked unit with people on their deathbed.
Should I get an in-home security unit? I am at a loss of what to do. She is in great physical health. She is currently at an independent living facility that has transitional care. I did get a two bedroom incase we need to bring someone in at night but the facility does not require we do so at this point.
The incident was never reported to the state because I took immediate action but I am afraid that if I don’t cover all basics from our angle too and it happens again they could hold this against me and I could be deemed a negligent care giver and lose my POA.
What to do?

Fawnby Nov 2023
Don’t assume that she’d be miserable in a locked unit. As her mind deteriorates, she won’t have the same reality as you do. She may not realize she’s in a locked unit. She may not recall that there’s anything outside it. The world shrinks for dementia patients.

My friend’s dad was in a memory unit for 5 years. He thought he was in a nice hotel all that time. He wanted to know when he could go home, but then he’d forget about it.

CADfoundation Nov 2023
Hi CLR1962

I really can empathize with your situation. When things start to go in the wrong direction - and continue to progress, it's really scary. You know the path she's on...you just don't know how fast she will be traveling. She's 89. This is an age-related disease. Eventually she will need more and more assistance. The question is - when.

And being the only caregiver intensifies how critical all your decisions are.

It sounds like things are somewhat stable at this time. Which is a good time to be reaching out to this forum!

Now, the immediate issue on your mind is: where should she be placed for her own safety? And from my own experience, if the folks at the independent living facility don't think she's a candidate for memory care - she very likely isn't. So for the time being, that point appears to be settled.

On to your next concern: The UTI, and a fear that it will recur.

The only reasons it would recur is if she has a new medical condition, she is struggling with hygiene issues, or she's chronically dehydrated.

[as an aside: from the brief description of the two incidents of wandering, I almost wonder if your mom didn't have a UTI the entire time? That would make sense when piecing together her story.]

So first, I'd take her to her doctor for a F/U on the UTI. I'd ask the provider to run tests that would rule out any underlying medical conditions that would contribute to her getting that UTI in the first place.

If that yields nothing, and since dehydration is another leading cause of UTI, I'd ask her if she's deliberately drinking less to prevent issues of incontinence. That's really common. If this is your culprit, it's an easy fix with incontinence support and educating her to the risk of not drinking enough at her age.

Finally, I'd next take a hard look at her home hygiene to see if her cognition (which we know is what's changing here) is impacting her abilities in this department. If it is, then you can bet other things are being neglected - such as brushing her teeth, eating a balanced meal, taking prescribed medicines - all of which would signal that more support is needed.

Lastly: Due to their verbal acuity, women are often able to camouflage their deteriorating mental status better than men. So keep this in mind when trying to evaluate where's she's at. She may tell you one thing, but you may be seeing another. Use your eyes and not your ears to best help her now.

Good luck, and thanks for placing your trust in this forum of folks like me who have been there and/or are there now. Anna

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Midkid58 Nov 2023
I wouldn't waste one second wof worry that the state will get you in trouble or take away your POA. They have their hands literally full of people who have serious problems.


Your mom wandering, well that's annoying, but it's very dealable.

She is, however, going to get better. I'd leave her in the facility where she can be monitored and managed and you can have peace. They'll move her to where she needs to go, and when.

Don't bring her back home. That's my 2 cents. Once you do, you'll never get her back to outside care and your life will never be your own again.

AlvaDeer Nov 2023
Your doctor should do testing and refer her for testing. She should see a neuro-psych doctor who will decide whether she needs a locked facility or whether this was due to a UTI.
At the least she should have a ALF now, in which she can move to locked cottage minimal care levels or to MC in the same facility.

People do not have POA taken from them when their elder wanders unless this happens over and over, testing isn't sought, and proper placement isn't in the plan. Especially when there was a UTI. It is clear however, that independent living is no longer good enough. Begin by exploring ALF. And get that testing done for baseline.
And of course, if she is living with someone, they can lock their doors. Don't you ALWAYS lock your doors at night? I sure do. Agree with Lea on the level of the lock.
Good luck. Hope you'll update us.

lealonnie1 Nov 2023
Its not illegal to lock your doors at night! Or to put a lock high up enough on the door that mother cannot reach it to leave your house. If you are talking about her place in Independent Living, she is not safe there, as management told you, and requires 24/7 caregivers. I take it she's out of your house and back at IL now.

With moderate dementia going on, your mother does NOT belong in Independent Living or living alone at all, at any time. It's too dangerous. Find a memory care AL that houses and groups together elders at the same level of impairment, so mom feels in good company.

How on earth can any facilty say that 2 incidents of wandering can be "chalked off to an incident and not an ongoing problem"???????? It only takes one incident of wandering and getting lost to die!

If mother is not ready for memory care AL, she's certainly ready for regular Assisted Living but the exterior doors will not be locked and she CAN leave on her own.

Memory Care Assisted Living facilities do not house elders "on their death beds" but elders with dementia too advanced for regular AL and elders who require a safe environment they cannot elope (escape) from.

Physical health has nothing to do with dementia. A person can be healthy as a horse and have stage 6 dementia and die from it!

If the IL she's at now has transitional care, meaning AL, get her moved asap, thats my recommendation. What is your hesitancy, I don't understand? Dementia does not improve but progresses to a point where the elder needs care with all ADLs 24/7.

I suggest you read this 33 page booklet to learn about dementia. Lots of Do's and Don't tips for dealing with dementia sufferers are suggested in the booklet.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 

https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia.

The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Best of luck.

cwillie Nov 2023
First - alarm the doors so you know when she exits. Second - get a GPS tracker so you can find her is she manages to get past you. Third - inform your local police detachment that there is a vulnerable adult with dementia living with you, many have programs set up for this and may even be able to provide you with a GPS tracker. And finally - you need to accept and internalize that although she is your mother and has always been a competent adult she now needs the same degree of supervision that you would expect a toddler to have, because her ability to make wise, adult choices is rapidly diminishing.
cwillie Nov 2023
Sorry, from your worries about your responsibility in all this I assumed she was still in your home and my advice is geared to that, I'm not sure why you would think you might get in trouble when she is not under your direct supervision.

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