Mom in Indep. Living but not sure that's the right place...
First of all, I'm grateful to have a community like this and I'm really hoping I can get some ideas.
My mom (82) was diagnosed with minor neuro decline two years ago and her annual followups went minor to medium to major this summer. It's now "suspected Alzheimer disease" so here I am. We live in SE Michigan.
I hold her DPOA, which has been 'activated' by two MDs at her doc's office.
She has a house, which she let my brother live in with her for a few years now. Mildly speaking, he is not a caregiver. He has temper/anger issues and does not "get" dementia and is unable to cope with her irrationality. While I do not believe he would ever hurt her, that has weighed into my decisions.
She seemed "okay" in her house, except there were three events that really got me worried and drove me to find a community for her to live in:
1. She scraped a knee outside and did not clean it until it was infected and stank. My brother basically had to force her to sit there while he hit it with alcohol.
2. She did the classic turn-on-a-burner-and-forget-about it, on the LP grill out back of her house. (Brother also stumbled across this one.)
3. Getting pulled into a huge argument between her and my brother finally tipped the scales the rest of the way.
Otherwise she is perfectly physically capable, no fall risks, can perform about any task you set her to although she doesn't want to shower anymore. Eww.
In August I moved her into an Independent Living community "with medical services available" about 20 miles from her house. We brought several of her larger furniture items, plus many photos and wall hangings to set the atmosphere. She's since taken most of them down. Then put them up. Then taken them down again. Etc.
Honestly, I've visited and seen her more since she's moved than I did while she was living in her house, but since then she's been incessantly railing at me, my wife and my brother with "I WANT TO GO HOME WHY CAN'T I GO HOME?" texts.
And there's the problem.
We explain it to her, she seems to understand and accept the situation, then "resets" shortly after and it begins again.
I've written her notes and asked her to read them. She reads them and is quiet for a while, but not for long.
It's exhausting. I have blocked her from time to time just to get some breathing room.
Then last weekend she actually hired a ride-share and showed up unexpectedly at her house, startling all of us. Since it's technically an Independent Living place, they don't restrict her activity like that. Nor would I ask them to, we knew what their limitations were when we moved her there. We did NOT expect my mom's flat-out refusal to adjust.
I have a job. My wife has a job. We can't spend all of our time talking her down from this stuff, and of course the repetition is maddening.
I could use some suggestions. Finding an assisted living place seems like a reasonable next step, but finances are 100% an issue not to mention the overhead of another months-long search while she's continuing her antics.
Moving her back to her house and having live-in care is financially impossible.
So.
Argh.
Thanks,
Rob
Comments
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Example of some of the things she's throwing at me (literally in the last 10 minutes):
"I also REALLY appreciate the work you are doing to get me out of this old people's place and back in to MY HOUSE. I will remember it forever."
"You are such a thoughtful man"
"Oh. And soo considerate"
She's leaning heavily into the sarcasm and guilt-tripping.2 -
Does the facility she is in have an alarm that sounds if she leaves her apartment/room? I've seen some of our residents in assisted living have WanderGuard alarms to alert staff if a patient is trying to leave.
If she's in a completely independent side, maybe she needs more assisted type facility/care where she can be monitored a little better.
Also, have you reached out to the hotline? The number is 1-800-272-3900. Sometimes they can assist you with community resources.
Gina
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So the only alarmed area is on the medical floor where they do have people who are worse off than she is.
They lock the outside doors after 9pm but so far that's been not a factor.
It's really basically an apartment building with a cafeteria where they provide three squares a day, and there is an extremely thorough activity calendar even on weekends. It seemed like a perfect fit.
Thanks.
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it doesn’t sound as if IL is the right level for her. If she can’t figure out that a scrape is infected, can’t remember that she left a burner on … then she needs supervision.
There’s really no oversight in an Independent living facility, and not that much help. I’m surprised there is a medical floor. Is the place a multi level facility as in IL, AL, MC?AL will have more help and will be staffed 24/7. The staff will be in each apartment a couple times a day checking on people. They still won’t prevent people from leaving if they choose to.
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My mom was in assisted living and even with that she was free to come and go as she pleased. The fact that she hired a ride share to get to your house is scary. What if she had forgotten your address or decided she was going to go shopping and got dropped off at the mall or go on vacation and got dropped off at the airport. You may have never found her. I understand that she may physically be in good shape, but this is all about her mental state. Dementia is about so much more than memory- executive functioning, decision making, lack of good judgment, understanding her limitations…. I assume she has access to money. This can be very dangerous when coupled with poor judgment so common with dementia. Does her apartment have a stove? If she forgot and left the grill on couldn’t she also easily leave the stove on? It sounds to me like she needs memory care or an assisted living (with more care options than was available at my moms place). If money is an issue you may need to consider selling her home to cover costs. Medicaid may also be an option, but in many states they will not cover mc or Al, leaving only a nursing home as the only real option. She may be able to keep her home, but then you have up keep. You might want to see a lawyer about Medicaid requirements(Medicaid is complicated). I will add a link to Medicaid requirements in each state. Even if you see a lawyer it’s good to have some information before the visit. Regardless of the option you choose some facilities can have a waiting list(just to complicate things even more). I will also attach a staging tool. If you look closely you will see there is an age equivalent at each stage. She would be considered at the furthest stage she has even one symptom for. Do you think a child with the age equivalent your mother has is at is safe to live alone? I hope something here helps.
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Wow, thanks for all that!
So per that document, she's either Early Stage 5 or the one right after that.
All she wants is to go HOME HOME HOME. Incessantly. She has definitely said she doesn't want to "die in this place," which is alarming to say the least.
YES she has access to her checking account but I have access to it also so I transfer out almost everything every month and leave her a small amount. (e.g. this month she killed it all on that uber.)
She doesn't understand/won't accept the explanation about the infection or leaving the stove on. She's very single-minded. The stove in her apartment has been disabled.
We have an elder care atty who's helping us scheme to save her assets and get her on Medicaid at the best time. That's a whole complex scenario also.
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The desire to “go home” is common with dementia. It is sometimes more about a desire to be safe, comfortable, or may even mean a childhood home. Did you notice at stage 5 it recommends- ability equivalent to a 12-8 year old, should be in memory care or skilled nursing facility.
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She's also been reported to have screaming outbursts, sometimes just "AAAAAAAAAAAAHHHHHHHH!!!!!" sorts of things, sometimes "I WANT TO GO HOOOOOOOOME" and it's affecting other residents.
I did not notice that 12-8yo thing. But it tracks.
Denial is a real thing and it's hard to get over.1 -
I'm so sorry. I do have a phone number for your area that may offer help.
Try 1-800-852-7795 in MIchigan area.
Also if y'all have a social services department, they may be able to offer assistance as well.
I wish I could be of more help. I am in the Mississippi area though.
Gina
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I’m sending good thoughts your way. This is tough. Lots of good info and advice above. We’re in a similar situation, but not to stage 5 yet. Fortunately our IL facility has an MC they refer to across the street and we’re in line for that. Maybe yours can help with a referral as well? The visiting and vetting takes a lot of time, and much of it during the workday, so maybe this will at least give you a shorter list. Also, the referral services (i.e., Care Patrol, Place for Mom) can help shorten the list for you by eliminating places lacking any must have criteria. Good luck to you. You’re not alone. Continue to take care of yourself—the text abuse can be exhausting. Laughter helps.
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Someone here helped me by sharing about anosognosia, which is very different from denial.
It is part of brain change for our loved ones.
This short clip helped me.
I also sent it to family members.
Wishing you well,
jen
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Read the book “The 36 Hour Day” recommended by a nurse. You can’t reason with someone whose reasoner is broken. She can’t comprehend she has a memory problem. She should no longer be left alone. Either AL or MC is what is needed. If you choose AL you may have to move her again to MC as the disease progresses. For her own safety. MC caregivers are better trained to care for dementia patients.
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@rprussell2004
There's an old saw around these parts that by a time family is willing to accept AL, that cruise has sailed and their LO is appropriate for a MCF.
If you mom wasn't safe in her own home, she won't be safe in independent living either. She might be OK for a short time in AL, but supervision there is minimal and she may struggle to socialize with residents who don't have dementia.
In your shoes, I would create a therapeutic lie as why she can't come home— keep it something unrelated to her condition. Perhaps the house needs to be tented for termites or the sewer main broke and there's no water now. When you move her to a higher acuity care level, restate the fiblet when she asks to come home. To that end, we found it best to keep dad's MCF room de-personalized by not decorating with familiar things.
HB0 -
by a time family is willing to accept AL, that cruise has sailed and their LO is appropriate for a MCFOh lord.
We liked the place she's in because the availability of on-demand/ala-carte medical assistance made it seem like we could move up to a sort of AL and then MCF (the medical floor) as she progressed.
And I think she really fooled us with her visible level of independence. We'd had her evaluated by several people familiar with this disease and everything pointed to this approach being sufficient.
What's thrown us off is the absolute vehemence (and persistence) with which she's opposed any of it - and also how hard she's battering us with calls and texts.
One of her long-time friends has also decided she's consciously trying to be super-manipulative.
This morning:
"_____ is ok" is referring to her allegedly having spoken with my brother and his having agreed to let her come back - which is a straight up lie that she repeats every time.
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@rprussell2004
Your mom likely has anosognosia and is completely unable to appreciate the degree to which she is impaired cognitively and is unsafe at home.
The first rule of Dementia Fight Club is that one should never attempt to reason with a person who has a broken reasoner. You will never convince her she needs to be in care. Ever. I can appreciate the desire to have consensus or even her blessing, but it's not going to happen.
Safety trumps her happiness right now. Try to look at placements as something you are doing for her, not to her. If that doesn't work, remember it's the dementia taking away her autonomy, not you. Unless she bought a generous LTC policy to pay for in-home care and supervision, she made a wish, not a plan.
Many families find they need to disappear the phone because of the constant calls and upset they cause both parties. Another option is a cheap burner phone she can call you on. You'd record a comforting outgoing message and look at it once daily at a time that works for you. In an emergency, the facility will call you.
HB4 -
@harshedbuzz "Dementia Fight Club" lol. Sure feels like it.
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Those texts sound like my mom. I think the anosognosia is the worst. There is no indication for them that there is anything wrong. The belief that she can do things she is not capable of is what really causes all the problems. Between that and poor judgment she is not safe on her own. Who knows what she might try to do. It is so hard to give up trying to convince her. Any reasonable explanation is going to be countered with an argument. It’s easy to get sucked into it. You need to change your mind set. You don’t need her approval, you don’t have to tell her everything that’s happening and it’s ok to fib. You may need to consider asking the doctor for medication to help with the anxiety. It can take a while to get the right medication and dose, but it made a big difference for mom.
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Is it worth reminding someone that they have dementia/alzheimer's?
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It is the opposite of worthwhile and a violation of Rule #1.
It will only antagonize her and make it harder for you to take the next necessary steps. She likely has anosognosia and is unable to appreciate the degree to which she is impaired. Telling her she can't make her own decisions because she has dementia will feel like gaslighting to her.
It's easier to get the situation under control if she sees you as her ally.
HB0 -
No. You might say something like memory problems, but it is best to blame placement on something physical, like you are afraid of her falling. You are going to get an argument every time that nothing is wrong with her mind, she is not crazy, then she will forget and you will have to do it all over again.
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If you remind her she has dementia one of three things will happen: she won’t process or remember it, she will fixate on it and be anxious 24/7, or she will deny it and it will cause repetitive arguments. Just mention memory problems due to age, and physical issues that will need 24/7 staff ( which there are in AL and MC). Shower help, medication management, poor balance, that type of stuff.
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My moms anosognosia is so bad that she is unable to accept many explanation involving her health. It doesn’t matter how many times she has fallen, she doesn’t need someone to “babysit” her while she is in the shower. Sometimes she talks about wanting to do things she hasn’t been able to do in 10-20 years. She believes she is perfectly capable of managing her own medication. Anosognosia is so awful. But everyone is different. I would suggest you to be cautious with an explanation p. If these kinds of excuses cause pushback and agitation, I would be ready to pivot to a different direction. Possibly something unrelated to her health, they will be doing a building remodel, the independent living complex is closing… As far as Reminding her about the dementia, that is a hard NO! She will tell you the doctor made a mistake, they never said that, you don’t know what you’re talking about. It will become an argument. Even though mom will occasionally admit that she has dementia, she believes she is in the very very early stages. It is a battle you will always lose and it is not worth the anxiety and effort.
0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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