Mother fixated on going back to her house after 3 weeks in assisted living. What to do?

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Mother fixated on going back to her house after 3 weeks in assisted living. What to do?

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Long story short - my 83 year old mother was living at home but memory was getting continually worse, refused to even consider AL of any sort, broke her arm in fall and when discharged from Rehab hospital to AL. GP and AL does agree that she has dementia probably in the 4-5 range where she forgets having breakfast sometimes, doesn't remember her home address where she has lived for 40 years. No one has told her that she has dementia because she would deny it and even when we mention how bad her memory is, she believes it is typical and she can still live on her own at home which she can't.

So right now, she continually asks why she can't go home, she needs to know what's going on ( even though we have told her she can't go home per Doctor's orders). We tried to get companion care in AL but when the director came for the assessment, he said he didn't think it would be helpful because she just spins on going home. My sister who is medical POA is refusing to help her get some med's that may help unless we can do a GeneIQ test. We asked my mother's GP, they said they don't do that test but referred us to a psychiatrist who doesn't have any availability for 2 months. I have also seen medical reports questioning the useful of these gene tests for anti-depresssants so it feels like a false constraint. And when I push back on Medical POA, she gets defensive then blocks me on her phone.

I am just not sure of what to do next. Any advice would be helpful.

Assisted Living Burnout Care Decisions Memory Loss

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Every morning when you get up, read the first paragraph you posted here. That is all you need.

She can’t go home. You cannot take care of her at home. So she stays put.

It is a shame your sister will not cooperate in getting her meds. I would do what someone else suggested of recording her daily sundowning. Show it to your sister.

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Sometimes the best redirect is none at all. Instead of telling her "this is your home now", something she will never rationalize, ask her about the furniture in the home you grew up in. Talk about the color of the drapes or the nice tree in the yard. How you hated all the leaves in the fall. This will create comfortable feelings. Bottom line she will always think she is going home and you can not teach her otherwise.

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Am a non-professional Genetic Genealogist who does family history and "related" genetic analysis with chromosomes (Autosomal, YDNA and MtDNA) for some years, without charge. Had not heard of Gene IQ until now. For anyone doing DNA type testing, there are rights a person is afforded as to whether they want to contribute a physical sample (saliva or cheek cells) to a genetics testing company. Genetics tests are not medical tests per se and only in recent years have they evolved toward more advanced areas of DNA analysis that Gene IQ does. This genetic testing may fall outside the legal realm of what a medical POA might legally cover. I believe you may be well served by speaking with someone at Gene IQ about this issue and what their privacy protocols may be. Explain to them the situation. From my own experience having done Genetic Genealogy tests for family members, there must be actual and legal consent from the person who furnishes a DNA sample for testing. Having been involved with Genetic analysis since around 2000, knowing the "evolution" of various test protocols with DNA, my opinion would be that even with such testing, given that medications are composed of the main medication chemical plus various other inert ingredients, considering that any medication is essentially a chemical combination, someone might potentially have issues with one of the inert ingredients that don't constitute the beneficial drug therapy itself. So even with my own background, opinion would be "pass" on this particular and just try a medication in the way 99% do, take one and observe for any side effects. As a further note, certainly not speaking for this company, but even a popular Genetic Genealogy company "twenty three" has ties to pharmaceutical development companies, and a question becomes if a person wants to have that potential tied to their DNA sample.

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Good for mom, she has some sense left.

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Its oh such FUN when mom is making her daughter's life a nightmare and carrying on with dementia, huh cover? In your mind, it's better for all elders riddled with dementia to stay home drinking bleach, getting burned on the stove, blowing up the microwave and wandering off to get run over on the highway than it is to be in some "prison like AL." He who fought tooth and nail to EXTEND HIS STAY IN THE GOD AWFUL SNF he was sent to for REHAB, where the food was dog food and on and on and ON.

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By insisting on a test that is not essential, moreover one which she is doing nothing to facilitate, your sister is denying medical care to your mother. That's neglect.

If I were in your position, I would report this to the social services and challenge your sister's position as your mum's POA.
In the UK, Legal Power of Attorney (LPA) can only be applied for by the person who needs the help, while they have capacity. I'd imagine it's similar in the U.S. and Canada.
If they are not deemed to have capacity, then a family member, or friend, can apply for deputyship through the courts, so that they can have a legal right to make decisions in the other person's best interests.
There must be some similar legislation wherever you are, so that you can protect your mum's wellbeing, even if she no longer has capacity to make that decision.

Speak with someone about how to ensure your mum gets the medical intervention she needs, without having to wait for unnecessary and (I'd imagine) expensive tests to be done.
This is completely impractical when your mum's health situation could change in an instant, and she could be in discomfort, or her condition could worsen while waiting for tests and their analysis.

I'm not sure that you should worry about your sister's reaction, as she isn't having much to do with you, as it is. If she'll stop talking to you because you disagree about the testing, then you can't trust that she won't fall out with you over something else that's inconsequential.

Remember that you are not responsible for the bad decisions of your family, including your mum who must have given your sister this power over her affairs.

Please take care of yourself and remember that you can't do any more than you can. Wishing you all the best.

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The OP's sister is already their Mom's PoA. This OP would have to contest that through the courts and seek guardianship. This is both time-consuming and very expensive and she'd have to be very certain to have a winnable case.

Also, the legal argument for neglect in the US is a very high bar here. What the OP is talking about with the testing wouldn't even get anyone's attention at APS, especially since she's already in a facility.

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Your mother needs time to acclimate to her new environment. Did the admission staff tell you and your sister to not visit for a few weeks? Or to only talk to her on a phone a couple times a week for a little while?

If they did, then do this. If they did not tell you to, you and your sister need to do it anyway. Starting today neither of you visits for at least two weeks and you only talk to her twice a week. So for the next two weeks, she gets four phone calls a week and that's it.

Three weeks is not a long time for a person with dementia to adjust to AL.

I was a supervisor at a very nice AL and I'm going to tell you some truths.

1) Your mother needs to be taking something for anxiety and anxiousness. A drug like Ativan as needed will help her greatly. Your sister needs to get over herself and not fight you on this.

2) Your mother may acclimate very well to the AL life and even start enjoying herself. But she may never let up on the begging and demanding to go home when you and your sister are around. You must be prepared to accept this because it happens quite often.

I have seen residents be the life of the party at the AL. Very active social lives, friendly, and really enjoying life. The second their family shows up or calls, everyone's favorite social butterfly is replaced with a blackhole of negativity, guilt-tripping, and begging to go home.

Please take my advice and give your mother time to acclimate. No visiting for at least two weeks and only two phone calls a week for a while. If she starts up about the going home on the phone, you end the call and don't call back for a few days. You and your sister both need to do this.

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I wish I had done this. Our AL told me to visit, that my dad was complaining and to please call him/ visit more
but now I am stuck. I wish I had taken this advice at the start

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Do not give in!! 3 weeks is short
it’s tough, but you need to ignore her pleas to go home at this stage . You may need to visit less for now

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When your Mom was at home, was she able to take care of herself? Prepare meals, eat, toilet, shower, clean, etc?
Was the only reason for AL, her broken arm and forgetfulness?
If at all possible, I would get her home with care providers.
I sympathize with your Mom and family. It's a difficult time.
Best wishes.

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She would need 24/7 caregivers. This woman is in memory care .She needs constant supervision . This woman can not live alone. Unless she’s rich to hire 24/7 caregivers , or the family is going to do the caregiving , or a combination of family and hired caregivers cover the 24 hours , this idea is not sustainable .

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"Medicare Part B does not cover genetic tests used for predictive purposes."

Source: https://oig.hhs.gov/oas/reports/region9/92003027.pdf

You better ask how much this test costs before doing it...then ask your sister if she's gonna pay for it.

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Hi - Here's what made the difference for me. It's for #1 her safety, and #2 her nutrition. My mom recently went through the transition from our house into assisted living. We moved her the day after Christmas, from the 2nd skilled nursing/rehab facility and lengthy hospital stay at the beginning of Nov. She's a right mid thigh amputee with severe COPD. I thought I was doing really well with her living with us for the last 5 years, catering to her every need, my husband and I moved upstairs, moved her into our main bedroom after some remodeling. Yes I was exhausted, yes I was on call 24/7 and my husband and I stopped going out to dinners, etc., but I was doing really good taking care of my mother and she was happy. The day the doctor in skilled nursing said she needs to go to asssited living for her safety and nutrition - it hit me like a brick. We had 5 days to find a place and move her, and I will be forever grateful to Care Patrol that acted like a broker to show me around assisted living facilities in our area, that met my mom's needs, personality and price point. I would never have found the place she lives now without the wonderful help, even with movers to move her things without the broker. My mom hated it at first, for a good month, 3 weeks is not long enough to adjust to any situation. My advice is to make it as home like as possible, and remember you are doing this for her safety and nutrition. Give her time to adjust, don't force the conversation onto her that she is staying, let it slide, you aren't lying to her, don't feel guilt, just let that conversation go, change the subject. Comment on how much better she is doing, how much stronger she is (assuming she is) and let that conversation go. There's no reason to squash that hope if she has it inside that she's going home, but keep it as maybe, or sometime soon. It takes weeks for someone to adjust, and make sure she is out of her room each day and doing the activities offered, that she is socializing with her peers. I'm 100% for additional help, companion care, that's not the doctor's decision. My advise is to stop pushing the "she needs to know" feelings your having. Ask yourself why? Is it for her benefit or yours? Give her time to adjust, 3 weeks is not long enough at all to new surroundings, and get her out of her room to join in activities. Let the needs to know issue go, and gloss over that conversation. If it not the right assisted living facility, find another one where the residents are happy. I was really lucky. My mom loves it now, puts her make-up each day, is excited about wearing new clothes, playing bingo everyday (yes they have bingo every single day and it's a BIG deal there) and she's made friends, and does PT every day. She looks fabulous, the best in years. I did the best I could, but I can compete with bingo every day! Now, I'm no longer her caregiver, I'm her daughter again. I wish you good luck, let it slide about "needs to know" and remember it's for her safety, and nutrition.

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LauraAT: I am glad to read further down this thread that your mother is on a list for residence in a memory care facility. The ill elder who wants "to go home" is not referring to an actual brick and mortar structure.

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Did you know that UTI's (Urinary Track Infection) in the elderly can actually cause confusion and sometimes ends up being mis-diagnosed as Dementia?

Don't be so fast to push her into a one of these places where the neglect and abuse is often off the charts. Try doing as your mother is pleading with you. Let her go home and find her in home care!

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Where are these places where neglect and abuse is off the charts?

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My husband wanted to go home when he was home. He is now in a SNF and still occasionally wants to go home. People with a cognitive issue (his is Parkinson's Dementia) often ask to go home. It is not always what it appears to be to us. It can be that they are anxious and seeking comfort; it can be that they need to feel safe; it can be that they are thinking of an earlier "home" like a childhood home; it can be many things other than the literal thing. The best you can do is make her environment home-like, ensure her safety and comfort, and respond to the feelings she is expressing rather than the literal wish. You probably already know to distract, to stay calm, and know that it will pass and then be forgotten until it comes up again. If there is a true issue of excessive agitation, a medical solution may be warranted. It is worth considering the fact that any change can be upsetting for the cognitively impaired, and your mother has recently been through a lot, so she may very well need that period of adjustment into her new environment, which, sadly, will never truly be her home but it can be a place of comfort and safety.

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From my experience, it can take a copule of months for a person to 'settle in' to a facility / new home environment. Many will tell family NOT to visit to give new resident time to adjust. This is a personal decision.

* You do not argue or try to 'reason' with a person inflicted with dementia.
You say things like "I'm working on it." Period.

* You focus on her feelings, not her confused cognitive expressions.
She is scared, fearful, wanting to be in familiar territory (her home).
Address how she feels (alone, scared).
Give her 'space' / room to express her feelings to get them out.
You offer reflective listening "I hear you saying xxx" - so she gets it that she is being heard / listened to (shows respect, too).

* I believe it is up to you / the family on getting companion care in AL - I would think that would help put her at ease - even if she is 'spinning.' I believe any / all support will help her.

--- Personally, I would question a facility director (?) saying that to a family member. It doesn't make sense to me to turn away anyone that might be able to provide emotional support. Your mom feels scared and alone. Any specific focus on her might support her to feel calmer even if she is spinning. Fear and confusion does that.

* While somewhat obvious, it would help if you and your sister (POA) could get on the same page with care. I don't know what a GeneIQ test is although if at stage 4-5 dementia, I would support "a" drug that could calm her down. Sometimes, it takes a while experimenting on what works (unfortunately).

Gena / Touch Matters

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Sister may be in denial so for her the test somehow may give her some answers so she may feel more communicative if you agree to the test. You may feel it’s futile but this may mend things a little. What feels like lies to us is a way to enter her world, however often it occurs. Calling less often will help mother get used to AL. Calls may remind her of home and what she’s missing. Caregiving, even from a distance, isn’t for sissies.

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I have no objection to the gene test but my mother's GP said they don't do this test and referred us to another Dr who doesn't have openings for 2 months and I don't even know if they will do the test. My sister won't allow any medication until we get the test but she has done absolutely nothing to find a Dr that will order the test. That is my frustration.
So I am making a list of Dr's and will call them all to see if they would be willing to order this test and when their next opening will be.

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I was in a very similar situation. Mom wanted to move in with me or back home. We had a white board put in her MC. On it we had a note from her doctor why she was there and other useful info. This allowed her to see the message thru out the day, and when she asked the staff, they would show her white board message.

Each person's path of dementia is unique. No two people travel the same path, but they do have the same milestones (stages).

Around the seventh month at MC, mom wasn't talking about going back to her house. Around 10 months, mom no longer remembers her house but considers the MC as her home. She also made comments this was a nice place, the food was good, but she gets a little bored sometimes.

As everyone else has mention, there is no cure. There is nothing you (or your sister, doctors, etc.) can say or do to change this. Drugs do help treat the situation (like stress living in AL), and that is a good thing. Remember, you are not responsible for their happiness, but their safety.

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That last sentence has gotten me through a LOT in the last 6 months (I had to place both my dad and stepmom within days of each other - my dad has Vascular Dementia, and my stepmom has unspecified dementia) - my stepmom was SO good at masking and after some very unfortunate things happening in the home and a few hospital visits - it was determined they were not safe in the home. My stepmom thinks she is at the memory care facility to take care of my dad, however, she is much "sicker" than dad in so many ways, including the dementia symptoms - and her sisters often do not see it as they are far away. I struggled so hard in the beginning on whether I was doing the right thing...as the disease progresses I now know I did and I continuously remind myself - I am NOT responsible for their happiness (it is a blessing on days they are happy) - and truly, I wasn't even responsible for their safety...but I am now as their POA and the ONLY way I can keep them remotely safe is in a memory care facility. Even there it is tough, they both fall and try to hide it, they mask symptoms, it is a full time job! As someone else mentioned - caregiving, no matter what isn't for the weak. My heart is with you!!

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Just posting that the gene test was amazingly instrumental for my son. As it turned out, he didn’t need any antidepressants, just methylfolate and it’s made a big difference in his life. He is a regular 20 something but had crippling anxiety.

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I have no objection to the gene test but my mother's GP said they don't do this test and referred us to another Dr who doesn't have openings for 2 months and I don't even know if they will do the test. My sister won't allow any medication until we get the test but she has done absolutely nothing to find a Dr that will order the test. That is my frustration.
So I am making a list of Dr's and will call them all to see if they would be willing to order this test and when their next opening will be.

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I know a little time has passed & you have more answers now. I just had a comment on the gene test. This is for the anxiety & depression. Although it is not necessary, it would have been a huge help in my moms case. For several years they did just trial & error with meds that worked for most people. Some made her really loopy, some made her have many tia’s. They finally found one that seemed to help without a lot of side effects. At one point she did have the gene test & it showed she should never have had the first few meds she had been on. So although not necessary, it can be helpful for some people & save them from taking medicines that can make things worse. Hope this helps with the disagreement with your sister.

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awe I feel sorry for your mother and for you - your mom is use to living a certain way, even if her memory is going, it's only natural that she is missing that life! i have had two experiences one with my dad and now with my brother. If there is no way at all that they could stay in house, even with the help of aides etc then you have to make that hard decision, that she is safer where she is now. When you see your mom, be empathetic and just listen to her, she may realize herself that's it's impossible and she is also scared - the next step to dying is going from your safe haven to a nursing home then your demise. Bring her pictures, or her favorite songs, ask her about her life as a child, young girl, adult and just listen even if she says things over and over again, you will be glad you did after she is gone you won't have the guilt feelings that you feel now. In time, she would look forward to your visits, provided her memory is ok now and then, to tell you some NEW things she remembers on something new that happened with her new friends or at the facility. Good luck and God Bless you both!

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What if you tell ":this is your new home" ecah time she asks?

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Assisted living/personal care is all you can do for Dementia. Your mom needs custodial care. Everyone wants to go home, but they are a danger to themselves. I would think your sister would know better, but I have a weirdo in my family who disagrees with me and thinks my mom just needs a Med Alert button. Remember if there is a fire, can they escape safely on their own?

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Hi LauraAT, so sorry you are going through this gur wrenching situation. I too have a similar situation except my mother 75 with metastatic inflammatory breast cancer (rare) isn't in a AL but is living with me now. About 7mtha ago my mom was in hospital and in order to be released I had to either situate her in a home or live with me as she can no longer care for herself. I downsized her home, sold it and vehicle and moved her in with me. I kept some of the most important things of hers (pics, decor etc) out of storage to make her surroundings more familiar. Hopefully you have done the same? Mom is on hospice now and Dr has prescribed mirtazapine and atarax for anxiety and depression. They have worked wonders. Only every so often does mom mention wanting to go home. Nothing stressful just a question or 2 and I tell her honestly what's happened and she says oh yeah. And that's the end of it. She's forgetful and at times confused but I redirect her and that calms the situation. Unlike you I have no siblings and basically no one but me to take care of her. I read read and read. It's a daily struggle to stay on top of all this as I am in uncharted waters (for me)it's also heartbreaking as mom has always been the rock of our little family. Take charge etc. this page and several Ibc pages are my lifesavers. Is your sister mpoa denying mom has memory issues?(Dementia) Maybe you and other sister could talk with her face to face and voice concerns?? As I said mirtazapine and atarax are both excellent for us.
I hope and pray you find a solution to this awful problem. I will say remember.. do what you think is best and take care of you. That's very important. Worrying all the time isn't good for your mental health at all.
Prayers for you and mom.

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My 101 year old grandmother went into care at 90 and asked every day until her death when she could go home. Sadly, you either have to redirect the moment, or get used to the question. If your LO can absorb a truthful answer, tell her. But with dementia, the loop just keeps coming back to the issue uppermost in the mind. The PCP may be able to act in the interest of the patient if the HC POA refuses. If the POA doesn't want to act or doesn't agree, and the patient is suffering because if that, there are ways to have the POA reassigned. See if you can find an eldercare attorney or if the state has a hotline to which you can report neglect (because not acting IS neglect). Good luck. Wishing you loads of patience!

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So I am making a list of Dr's and will call them all to see if they would be willing to order this test and when their next opening will be. I am frustrated because my mPOA sister should be doing this especially if she wants to require this test to be done but I haven't seen any movement so I will just suck it up and do it.
I may also call the County agency for Aging just to see what they say.

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Is this a generalized anxiety disorder? Is he getting treatment for that?

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My wife was in a care facility after she broke her wrist. Worst place ever. The only reason i left her there that long 1 month was to get her therapy to walk again. They could not even do that. All I am saying is not every place is great.

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Which has nothing to do with the question OP asked.

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Ask her GP for anti-anxiety medication. She is anxious about staying someplace that doesn't feel "familiar." Given a few more weeks, she should feel more comfortable... but may continue to ask about going home. An anti-anxiety medication will help her to relax through this transition period.

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Sometimes saying “ you can’t be released until the doctor says “ ,” the road is closed “, “ the house needs renovations “ or other therapeutic lies are effective , especially if they are far enough along in dementia that they forget what you say .

Sometimes the lies keep a person calm , letting them think they will go home. Sometimes the truth gets them more upset , which is why people lie.

However , if they are that fixated on going home to the point where they are agitated waiting to go home …….
Then you have to switch to not giving them hope of going home . We were in a similar situation with two different people and after seeing that the lies were not working , we told our LOs that
“ you have to stay here where the nurses are .” Or “ the doctor said you are too frail and need to be where there are nurse’s in case of an emergency “. “ the doctor says you can’t go home , this is where you need to be , where you have nurses. “. Or simply “ this is where you need to stay “. Whatever worked .
It’s trial and error .

And like the others said , let the calls go to voicemail , and don’t visit so she adjusts. Perhaps call her once a week for now .

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I am remote so I can't visit right now but will reduce my daily calls to 1x/week near term. See how next week goes...

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I would center most of your visits around an Al meal or activity. Act like YOU really are stoked down to the point of going without her. You might meet a welcoming committee, even if it’s just a couple ppl, who might reach out to mom, in which case you all have lunch together.

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You need to bring some pressure to bear on your quirky sister. Apparently she wants the GeneIQ test done so that meds can be prescribed appropriate to your mom? In the meantime your mom is suffering when she could be taking medicine to help her to feel better? That's baloney. I feel so sorry for your mom.

Mom's 83 and near the end of life. She has dementia, and GP and AL have even assessed it into the 4-5 range. What on earth does sis think could be helped by getting a test? Her dementia can't be cured, only the symptoms.
Mom's still in the 4-5 dementia range and she'll never recede to a lesser stage. She's still old. Doctors know what to prescribe without knowing the geography of mom's genes, and they've been doing it for years. Let them.

More tests are moot at this point.

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At 87 I totally agree about tests. I've pretty much decided not to undergo any invasive or recommended-but-not-essential medical tests/procedures unless my COMFORT level is at stake. I am completely open to meds that will ease pain (physical or mental) and increase comfort. Last time I checked, the Fountain of Youth still hadn't been found. Fact: there is no "cure" for old age, and best of luck to the obscenely rich guys who plan to cryogenically preserve their heads!

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How often do you visit? Have you allowed adequate time for her to acclimate herself to her new home?

If you are over visiting you are not helping her to accept her new surroundings.

Not sure what the testing is needed for, she has dementia, not much else that needs to be discovered in that area.

Back off, stop answering the calls, delete the messages, you are engaging her, she is where she needs to be, 3 weeks is not enough time for her to get adjusted, especially if you two are hovering over her.

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I am remote so I haven't visited at all. Initially, I was thinking to try to get her back into the routine where I would call every night around 6pm her time but now, sundowning is so bad, that I am trying right after lunch. But maybe by calling every day, that's triggering my mother so I might step that back as well. But my mother is not getting "hovered" at all since my 2 sisters that are local are not going because my mother starts yelling at them about going home and abandonment.

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Mother fixated on going back to her house after 3 weeks in assisted living. What to do?

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