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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.

It’s only been three weeks. She needs time to acclimate. No point in arguing.
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Reply to LoopyLoo
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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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ElizabethAR37 Mar 29, 2024
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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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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LauraAT Mar 30, 2024
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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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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LauraAT Mar 29, 2024
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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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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LauraAT Mar 29, 2024
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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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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LauraAT Mar 30, 2024
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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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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LauraAT Mar 30, 2024
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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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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strugglinson Apr 4, 2024
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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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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Reply to CSorth
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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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