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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You are not her MPoA and your sister who is, doesn't agree with anything you've suggested so far. Thus, you unfortunately have no power in this situation, except to take video of your Mom as she displays her anxiety and spinning and keep sending it to your sister (since she's gonna block you anyway).

The vast majority of participants on this forum have successfully founds meds and dosages for their LO's sundowning and anxiety without a gene test. Many will post there experiences here, so maybe send her a link to this thread so she can see the hoop she's created is delaying a solution for your Mom.

A few weeks ago my Mom's Primary doc started her on the lowest dose of Lexapro and it helped her immensely, with no side effects. No gene test.

The only other solution is to challenge her PoA in court and pursue guardianship.

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I will spend today looking at all the threads regarding med's and dosages that may help with sundowning and anxiety. I don't know what marketing she saw about this geneIQ test that so convinced her that it's necessary. But then, she's not really taking any action to find a Dr that will order the test and that's where I tear my hair out.
I may need to get my own appt for myself after all this. :)

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Give her time to adjust to her new surroundings. Some people will never be satisfied no matter how well cared for.

I am so sorry that she hasn’t settled in yet.

Have you spoken with the facility staff to see if they have any other recommendations for you?

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We have and they said her behavior is notable but not unheard of. When we told them we are getting 20 calls a day from my mother with her begging to go home, they told us just to block them. We are on the waiting list for a true memory care facility - the facility she is in now was not our first choice.

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It’s only been three weeks. She needs time to acclimate. No point in arguing.

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Been there, done that.

If you and sister feel there is no way she can be managed at home, just ignore her requests for now. 3 weeks is actually a short time. My dad has been in AL for 7 months now, and it is only now at the 6-7 month point that he is finally recognizing and admitting that he will and needs to be in AL the rest of his life and cant go back home. For now, just keep distracting her. You can say things like "no you cant go home now, not until you get better....." something like that, if you want to soften it.

Do try to keep working to see what meds she can get on to help. Psychiatrist's are busy. See if a neurologist specializing in dementia may have sooner appointments? or neuropsychology psychologist. And as someone else mentioned, some basic meds can be prescribed by the PCP.

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I will keep looking for a Dr, that shows some experience with dementia. The GP did offer to prescribe low dose mirtazapine or Cymbalta which my sister declined until she get the geneIQ test which the dr declined to order. That is why I am so frustrated. I think something would help while we wait. Meanwhile, my mother just calls daily multiple times and leaves voicemails that are heartbreaking.

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I don't agree with the AL director when he said that a companion wouldn't be helpful for your mother. I think if you get the right companion for her, that she will be able to redirect your mother and even get her involved in the many different activities that her AL facility has going on all the time.
Having someone to help your mother get her mind off of the fact that she can't go home, and keep her busy would be in my opinion, a Godsend.
Also the response "you can't go home yet, per doctors orders" is honestly the best response you can give, as that puts all the blame on the doctor.
And you just keep repeating it as often as you need to.
And as far as your mothers POA, unless you want to fight your sister in court for guardianship, I would just let her do what needs to be done to keep your mother safe and well taken care of.

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We are all in agreement that she needs to be there. I am wondering if the facility keeps track of whether she is attending any of the activities they have planned on a daily basis ( which is usually 5 - 7 activities per day). We are paying for the highest level of care which includes them physically meeting with her each day from the "Life Enrichment" team and staff reminding her when activities are starting,

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Wait the two months for the appt. And know this is long term.
In my own personal opinion honesty is best.
My own brother, with his early Lewy's Dementia diagnosis was given the fact by his MD.
While he admitted he didn't like it and didn't enjoy knowing where this was going, and was in fact very frightened by that, he was glad to know why he had to move to ALF, why he saw the world differently, why hallucinations were happening and etc.

To not know of your diagnosis is, imho as a retired RN, cruel. Yes, she may not retain the info. Yes she may deny it. That doesn't matter at all. You and her MD will TELL HER and this should be done together or with a social worker. And she will be reminded of it, and the hope she is wasting time and denial on will be over.

It is sounding like memory care will soon be needed.
I am very very sorry for all this. It is torment and torture to go through and to stand witness to. But not everything can be fixed. This is the facts. She has a right to be told them.

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Hi AlvaDeer,
Thank you for your response. We are on the waiting list for a true memory care facility. We would have gone there directly but they had no available rooms.
While waiting for the appt. I may look around and see if there is a better Dr. to help with the diagnosis. When I look at the referred Dr. profile, it doesn't show anything regarding geriatric care or dementia.

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Hello Laura AT,
I can see how frustrated you are at your sister’s refusal to allow standard care for your mother. And I can see how hurt you are over your mother’s unhappiness. Keep in mind you ARE doing the very best for her. You are doing the right thing!! As painful and guilt-laden as it is for you and her. My dad still weekly says he’s ready to move back home now that mom passed- he’s been in AL for 8 months. Is there a doctor at the AL facility that might see your mom and write a script for a calming med? I agree with you in that the most important thing is your mother’s comfort. 20 calls a day is extreme and can’t be good for your mental and emotional health. Is your mom calling your sister too? If I were in your shoes, I would share the burden of your mother’s messages with your sister by forwarding each of them to your sister when you receive them. You don’t have to listen to the whole message either, you know what they will say, so don’t put yourself thru the torment each time. I encourage you to seek a professional to help and support you as you work thru this transition period. You deserve comfort and peace too. I hope you find support and helpful answers here, check out the other answers posted to previous questions too. There are some really good perspectives and experiences shared! Take good care of yourself and try to release the guilt.

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Sister with mPOA has my mother blocked also. Me and my 3rd sister have been updating mPOA sister via group text about how many calls we get that day.
There is a AGNP that visits the AL facility weekly. I was able to get paperwork filled out for them to visit my mother (mPOA agreed) next Tues so I will wait on their feedback. I am not educated on if an AGNP can write scripts? I assume they can? or maybe they can order this geneIQ test.
I do find this forum extremely helpful and appreciate the contributors here.
Thank you for taking the time to respond!

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For the past 5 years I have been taking care of my father who was in AL for 4 years now in SNF and I never told him the diagnosis, when he asks I just say he has some medical issues the Dr. is working on making him better. I agree with funkygramma there is no reason for your mom to know the diagnosis and I actually believe it is cruel and it is going to cause her even more anxiety.

My father asks every single employee, Dr, nurse, CNA "when can I go home" or "what needs to happen for me to go home" and in coordination with me it is always the same answer, "Dr. needs to release you once you are better". It is an ad nauseam conversation. His reply is "is that a HE or a SHE Dr." long story here; and then "oh, she is not a real Dr." or "Oh, I do not like her" or "Oh, I do not understand her".

I am not sure how often you visit your mom but it will be better if temporarily you reduce the visits and do not answer calls, as to give her time to adjust to the new environment. I had a physical therapist going to see him 3X week and she assisted him into going to activities and helping him find other residents with similar likes and that helped him adjust to the facility and make friends.

Best wishes to you and your family through this journey, as it is not for the faint at heart.

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We do have OT and PT visiting 2x per week and her arm is healing very well. The PT has been calling me directly to give me updates and she also mentioned that she thought the obsession with going home was hindering her treatment.
I am not local and not planning to travel back there for the moment. My 2 local sisters have tried to visit but my mother turns into the exorcist when they have stopped by so now, they don't want to go.
As I mentioned to Mrslala541, I have scheduled for the AGNP that visits the AL facility weekly to see her on Tues. I will see what they say and if they can help.

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LauraAT, time for "therapeutic fibs". If she asks you take her that day to visit her house, tell her "we can't, they are repaving the road". Thus, each time she asks, make up another excuse.

I had to use therapeutic fibs with my own Mom [98 yrs old] who had late stage dementia. When she was moved to a Nursing Home, she thought she was in a hotel in the State where she was born. She asked to visit her parents, I quickly had to think of something Mom would believe. I said "they are visiting the old country" and Mom smiled saying "that is nice". Had to be quick on the draw whenever Mom asked to visit her sisters [all of whom had passed]. Making excuses Mom would accept.

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Right now, the visits are so confrontational, my sisters say "you can't go home yet, per doctors orders" then they leave. I don't blame them.
I stayed with her a week in the Rehab hospital and she was in pain so it wasn't that bad but now that the arm is healing well, she doesn't even have the cue that she needs 24 hour support.

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While it may seem mean, reject those calls from your mom and don't listen to the messages. Or just block her for most of the hours of the day. Call her when you have a few minutes to say hi and have a vague but repeatable answer to her pleas to go home "I understand you want to go home mom. When you're better, we'll see what the doctor says." End of story. If she continues, which she likely will, tell her you need to go and will talk to her tomorrow and hang up.

Your sister is being an idiot. Your mom needs more meds and she should get off her high horse and follow more the "normal" methods of dealing with dementia, not demanding some test that even the doc didn't want to order. Come on! Eye roll.

Sorry you are dealing with so much crap. Hopefully things settle down sooner rather than later, but they WILL settle down eventually.

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I was able to find a Dr that will order the test after they visit my mother at the AL on Tues. I agree that this test is not necessary but when I initially pushed back - then my sister wouldn't take my calls or communicate with me. So the test in imminent so we will see what it says. I appreciate your feedback.

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

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

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

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