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.
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.
I may need to get my own appt for myself after all this. :)
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?
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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 .
I may also call the County agency for Aging just to see what they say.
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.
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.
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.
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.
* 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
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!