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As some of you know, my mom went home from a SNF last week. She has 24/7 care. She begged to go home from the SNF and now she is begging me to let her live alone in her home (as she did for 35 years prior to her stroke). She calls me constantly to tell me she absolutely does not want a caregiver there anymore. It's not because of the caregivers' personalities or anything, she just doesn't believe she needs full time care. There is no point in reasoning with her and pointing out that she is in a wheelchair, can't walk or transfer, can't use her left hand. She simply says she can take care of herself. I block her number for most of the day to avoid the repeated calls, which of course makes me feel guilty. I see a therapist, I'm on an antidepressant, which was working well before this whole stroke episode. I don't know what to do. There is no way to answer her or reason with her on this topic. And of course it's heartbreaking. I know there's no answer, but I have been sobbing all day. I can't handle this.

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Xina, I'm so sorry you're dealing with this turn of events. It's so very painful. I know Been there.

Think of when your kids were 2 or 3. Yes, we explained things to our kids. But we did not expect them to reason with an adult mindset. There were times when you said " it's cold out there. The temperture says you have to wear a coat".

" Sorry mom. The doctors say you have to have someone there 24/7. It's a legal thing. I can't do anything about it".

You hang up. You don't take any more calls that day.

You get her to a neuropsych/neurology team to have her cognitive skills assessed. Antidepressant/antianxiety meds may help.

Crying is de rigeur. I do it almost every time i come home from the nursing home.
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xinabess, let common sense rule. It is perfectly natural for patients to beg to go home and then they are not happy when they get there. Then they focus their complaints on the person closest to them. That does not make you guilty. Sure you regret her decline, but do not accept the guilt. You are doing more than most kids would. You deserve a medal for it.
Medicate her agitation with an Rx from the MD. Firmly but kindly tell her NO about being alone. Keep her number blocked, accept only calls from the caregivers phones. Call her once a day and keep it cheery; as soon as she goes negative, end the call. Your health comes first, remember that.
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On Xina, you really have your hands full. So many elders still believe in their mind that they can live at home like they did decades ago, my own parents were like that. My Mom also refused caregivers.... even though my Dad felt we did need them.

Do you think her memory was affected from the stroke? Sounds like it was if she keeps calling you repeating, and thinks she can take care of herself. If that is the case, like you said there is no way you can convince her. I would just say to her "maybe tomorrow, Mom".

Seeing a therapist is good, I also go to one. And am on meds to calm me down which I should have done 7 years ago as one's body can only take so much. I spent many a night lying wide awake the whole night because my mind was running in circles. I was just not caregiver material except for the logistical side of caregiving.
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When you were asking for advice about your mother returning home I told you she was likely indulging on magical thinking, somehow when she got home everything would be as it used to be and she would have her old life back. Well her tired old body came home and her disabilities were not shed at the nursing home door and she is unhappy with that reality, and who can blame her? You have gone above and beyond in trying to accommodate her desires and she won't be whole again this side of heaven. Life sucks like that sometimes.
For your own sake back away and let her caregivers handle things. ((hugs))
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Perfect timing! I am dealing with this right now. Mom cannot walk but says she can, just not with me "nagging" her. I try all the diversions but she just goes on and on until I blow up, tell her she can't walk, can't take care of herself. Then she goes depressive for awhile, then acts nice for awhile, then starts the cycle again. She has some dementia but it is almost manipulative. Mom has in-home helpers a lot of the time. I am working on reducing my caregiving role more. I am at the end of my rope. She brings out the worst in everyone including me. Medals for all of us!
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I found it easiest to remember that the questions and behavior were coming from the damaged brain...not the person. For surely you realize that if she was rational these constant questions would not be happening in the first place.

Just remember .. This is brain damage you are talking to

Slow and easy. Just tell her each time....you must have this caregiver. And then move the conversation to something else that is happier to talk about,

I can understand crying over the damage and the stress of dealing with it. But remember, you are doing the best for her.
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Thanks, everyone. Your input helps a lot. I WISH my mom would agree to an Rx for mood/anxiety, but that is absolutely out of the question for her. She refuses to even consider that, so unless I force it down her throat, no way. I guess this is just a process, an adjustment, and, hopefully, it will be the new normal at some point.
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At some point, Xina, you're going to have to be the one "in charge". Mom, the doctor says that these are meds you need to take.....like little kids with Amoxil for ear infections. Part of her brain is broken, and it isn't making neurotransmitters in he correct amounts any more.
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I guess I will try to get a secret stash of SSRIs. Not sure that will help, but maybe. Every single one of my conversations with my mom revolves around her telling me she doesn't want an aide anymore. I feel like cutting myself off from her entirely, even though I would never really do that. How does she not GET that she can't walk or get out of bed? I know that's a stupid question. I guess it's the brain damage.
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Xinabess,
I do recall your situation and I'm trying to remember if your mom has dementia. I think it was suspected due to the fact that she has no judgment when it comes to her abilities and care. Is that right?

Do you know for certain how her memory is? I wonder if these repeated calls, repeatedly telling you things, asking to get rid of care givers, etc. is due to her FORGETTING that she already told you these things an hour ago. If she is forgetting, she thinks it's the first time she's ever told you that. It can be very frustrating.

My cousin would repeat the same statement a hundred times in one visit. She just had no idea that she had said it before. She sounded like she just couldn't let it go, but in her mind it was new news. IF THIS IS THE CASE, I don't know of any solution, because you can't make her remember. What you can do is protect your own sanity.

IF she does remember and it's not her forgetting that she already told you, then I would explain firmly that we were not going to waste a lovely visit discussing a matter that the doctor had already decided. Next subject and move on with an upbeat attitude. If she mentions it again, I would ignore her and leave.

Guilt here is not appropriate. You're smart to give yourself a break, see your therapist, take meds, and PLACE YOURSELF on the priority list too. Pity for mother is not very helpful here and neither is kowtowing to her. I'd get a plan and enforce it. Wasted energy on this is not beneficial. I hope things get better.

Have you talked to her aides to get their impressions on her mental state? Does she repeat things with them too?
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Xina, I don't know if this idea would work or not. When it is morning and time for your Mom to get up, have the Aide go to her room and tell her "Mrs. Bess, if you need any help just call for me" and walk out of the room. Then have the Aide be nearby but out of sight.

I know it might be a risk, but maybe that is the only way your Mom will realize that she really does need some help. Tell the Aide you will take full responsibility if Mom falls trying to get out of bed, hopefully Mom will ask for help before she tries that. All in all, it could be just the dementia doing the talking.
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xina- One of the worst times during the "old age suck" journey with my mother was the period from when she had The Big Fall in IL through having to place her in a nursing home. We tried a stop in AL along the way but she fell twice in her first ten days and I was told she couldn't stay. Mom was wheelchair bound, fell about once a week and couldn't change her own soiled Depends without covering the bathroom and herself, head to toe in poo. Yet - she was calling me several times a day insisting she could live by herself in a regular apartment- she was adamant about it. It didn't matter what I said, how I tried to reason with her - it did absolutely no good. My mother became rather mean and nasty about it and I guess that made it easier for me than if she had be pitiful. Eventually I was able to get her into see a geriatric psychiatrist, using a therapeutic fib. The psy changed up most of her medications, added some new "mood enhancer", as I call them - and after a month or so my mom was mentally better than she had been in years. Soon even mom was admitting she was where she needed to be. It's tough, tough, tough - and I don't know about you - but I was so unprepared for this side trip off the map of my life - I just never expected any of it, didn't see it coming - at least not to the degree it had become. You just do the best you can, what you know to be right and fair - learn to set boundaries and don't forget to look after yourself.
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Xina, yes, it's brain damage and no, you're not crazy. Geriatric psychiatrist is a good plan.
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Xinabess, Captain can tell you all about how to agree with crazy, so as to give you a quieter life and your mother peace of mind.

Rustle up some political skills here. When your mother says she can live alone, agree with her! "Of course you can, mother, *I* know that!" Then explain that:

the caregivers' contract is paid up until the end of the week/month/year/decade so they're making themselves useful in the house; or
the caregivers were a condition of her discharge from rehab, and there's just no getting round those rules; or
you've consulted her GP about letting the caregivers go, and he insists that they be retained for the duration of her convalescence; or
you have taken her concerns on board, and the situation is under review...

But above all, for yourself, stop trying to make her face unpalatable facts. You are dealing with reality so that she doesn't have to, and that is a great thing you are doing for her.
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That's a good approach. If she thinks the doctor will be upset or she'll lose money, if the caregivers leave too early, maybe, she'll accept it. But, if she forgets what you tell her....she may just keep asking about it.
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My mom has the same issue. Wheelchair bound but thinks she can take care of herself. Dementia maybe. But I also think some narcissism - if she says it - "I can take care of myself" - that makes it true. Forget the facts. Anyway, the lightbulb finally went on yesterday. She mentioned yet again that she doesn't need a helper. Well, she just happen to absolutely love her doctor - young, handsome, etc. So...I told her I talked with him and he said "Absolutely, until further notice, you must have a helper." She actually went silent, thinking about this development, and I didn't hear anymore - although I still heard her sighing when the helper showed up. Anyway, I am going to try and get the doctor to write an "order" on his letterhead that she must have a helper until further notice. I'll make copies and leave one with her whenever the subject comes up. Voila! At least maybe for awhile. Good luck!
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A few years ago, I would visit a good friend's mother in Rehab.(Which I later discovered is also a Nursing home.) She had a lot of physical problems was wheelchair bound, but also had dementia that I was not aware of for quite a while. She loved crossword puzzles and I took them to her when I visited. She would often ask me if I knew of any place that was hiring, because she needed a job. I thought it was strange, but now I see how that happens. She was oblivious to the fact that she could not walk, was incontinent, and couldn't remember many things. She held on to the prospect of getting a new job even at age 91!
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Xinabess reading Your post reminds Me of the great Blessings that come with great health and a ripe old age, but when the health fades it can be so cruel. I would suggest keeping the Carers on side as You could never manage on Your own. I know how frustrating it can be to be asked the same questions repeatedly, but I had to train Myself to answer politely every time as though I had never been asked before. Just imagine how cruel this stage of Life is for Your Mom. This time will be over much too soon, and all You will have is memories. Make beautiful memories, and bring joy into Your Life as well as Your dear Mom's.
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Xinabess: Hugs and prayers for you and everyone else going through this today. I have learned from the answers and so relate to the tears and sleepless nights. Rainmom put it so well about being so unprepared for this detour off the road maps of our lives!! I NEVER expected my Mom to be so sick for so long. Strength, peace, and a little humor to all of us. I would be dead without my Mom's private caregivers.
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Can u tell her that if she doesn't except the caregivers she will have to go back to the SNF. Because of her problems she needs professional care that you are not physically able to give her. I would not make her phone available to her. Tell her you will call once a day to check on her. Maybe you can set up a time. My Mom lost the ability to use a phone before she came to stay with me. At the AL she has none. I see her every day so there is no need for one.
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You cannot continue on like this...You'll break!!!!!!!!!!!!!
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You are dealing with severe brain damage. You must STOP taking things personally because your mother is GONE. There's a gibbering shell blarting out nonsense because she has severe brain damage. YOU are in charge. YOU set out the pills and you do not discuss them - adding a new one - the mood stabilizer? Say it's a vitamin/new blood pressure pill/diuretic - LIE, for chrisssakes, who is in charge here? Mash it up in a milkshake if you have to. MY mother had her table set for a big dinner party for months, convinced 'they' were going to come over that night. There was no 'they' and arguing did squat, the table stayed set till it was covered with dust, I didn't argue. I would get calls all times of the day or night from a deteriorated brain, total nonsense. I listened patiently for a minute and then said 'OK, goodbye' and hung up, and all other wacko calls went to voice mail. Come on, read the advice here, we have been there, done that, and realize what you're dealing with, it isn't anything personal. As I said, you mom is gone.
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Lassie: Well, besides "thou shall not take the Lord's name in vain," I totally agree with you! Xinabess has to get on with it! Is it painful? Sure it is! But the alternative is not being about the climb out of the ditch you've dug for yourself.
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X - My mom also asks to go home/new place - when I said I was working on it but that I had to make sure the wheelchair could manage .. she asked 'what wheelchair' to which I said 'the one you are sitting in' then she looked down & said 'I don't really need it ' ...this from someone who needs a hoyer lift & 2 attendants to transfer

Those who have dementia live in the lovely LA LA LAND of having the joy of seeing things for the first time .. again & again .. but they also forget as easily their own less than perfect circumstance that they are in need of assistance for everyday life - I try to think that this is one way for those with dementia to accept their changed life -

I usually tell mom that I'm working on it usually saying that the place I'd like her to be is full but she is high on waiting list [she is for 2 years] & it's only 4 minutes by car from me - I give some details so she knows I'm doing something - however she thinks it will be an apartment not another nursing home

I once told my husband that I could send a hologram for the visit as she repeats same items 4 to 6 times in an hour - I find bringing her a treat to drink/eat at beginning of visit so that as she starts to veer towards useless questions I point out she needs to finish her drink & that works quite often - it is not kind to her to get her upset over things neither of us can control

Tomorrow my husband & I will see her & bring some wine to share with 2 shrimps each for a treat to celebrate our Thanksgiving here [really Monday] - she will be pleased to see this & spend most of our visit talking about her 'treat' - this also has resulted in her associating me with a positive/treat so that her behavior has now switched to joy seeing me even if she can't remember my name

Good luck - pick & choose the answers you have been given here & above that will work best for you or maybe work through them as it seems best - please remember you are not alone in your situation as much as it may seem - there are many of us who are in same place ... I find the comedy channel is sometimes necessary to get my much needed laugh a day & I need it at times because I'm also taking care of dad too [no dementia with him though]
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Sorry, llama. I get impatient and tend to spout off late at night. I would hope Tha Lord will forgive all of us for all he's putting us through, even if we get testy.....Now, my mom's caregiver was really good at deflecting endless silly questions. Mom would say, 'where is so and so?' 'Is so and so in the basement?' 'what time is so and so coming home?' 'did you see so and so this morning?' over and over and over. And my mom's caregiver would say, "now, now, everyone. is where. they are supposed to be. Nothing for you to worry about, they are where they are supposed to be." Mom mulled that over and was content for a while, lol.
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I needed to read Lassie's no nonsense tough love earlier response. She has lived what I'm living now. Hang in there Xinabess. We are all on your side.
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moecam: What? Says she-doesn't need the wheelchair? I hope I never live on that planet!
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Lassie: If the Lord can forgive a sinner, such as an alcoholic, then he most surely forgives everyone! I wish I had been as good with my late mother as your mom caregiver's comments. Spot on!
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Correction-*mom's*
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Have to jump in here and give Lassie a supportive comment. Everyone on this board is so helpful, comforting, and nonjudgmental. But sometimes you just need that splash of cold water on you that says - this is the new reality, so wrap your brain around it and get on with it. The unvarnished truth. That's what I needed today. So thank you, Lassie, for saying what most of us don't want to think, but what sometimes just is.
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