Is it the dementia or is Mom trying to manipulate us to get her out of the rehab center?

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Is it the dementia or is Mom trying to manipulate us to get her out of the rehab center?

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Gosh, a few months ago I was in your shoes (as were many here) over my father. Different gender, same story. He wanted to go AWOL on the rehab facility and it was very tough because the place was hard even for me to deal with. I also couldn't bring him home -- it was just beyong my capability. So the rehab made a deal to release him and I told him that "they will only release you if you go to a living facility" and did so under the guise of "I need either get a vacation for a week or a nervous breakdown. pick one" but that I could enjoy vacation unless I knew he was okay. he agreed to stay for a month, after lots and lots of noise "get me out of HERE" I had to stay strong. it is expensive for adult living, but it is more expensive (only a millionaire could afford expensive) for home 24/7 care. I just had to stand firm and not take the calls when he called, telling him that when I checked the message on the line it was too late to call and living through the guilt he gave me because I ddint return the call. Slowly, slowly you will pull away from the guilt circle cause if you don't you will lose yourself, your identity and your will to live. Before I determined that my story was NOT different than those around me, I crashed, hit the bed and lay there for 10 days. hubby brought me food and I showered every few days. but I shut down. hubby finally said "you going to lay there and die or are you going to get up and do something about it?" the combination of the love and support I feel on this site and his stern-ness and insistence drove me out of bed, on my feet, with the understanding that coming home is NOT an option for dad for so many reasons and I just had to know that in my gut. He cant even come for visits because I am afraid it will trigger him.

The fact that you found this site will mean a lot. Stay close. Read everyday. There is so much to learn.

As I read these replies, I realized how fortunate I am to be embraced by dozens of people than don't know me, but know me far better than most. it moves me and it sorts out the tricks from reality.

Their is alcoholism in my family. I wondered whether I was affected, so I checked into it. I was told, "if you are even here to consider it, then just stop drinking" I will say to you "if you even THINK your mother has dementia, then at 92, she does. And like so many has told you, you cant trade your life in for hers. Its hard. It hurts. You feel guilty. You feel inadequate. These are feelings we have all gone through. You can either get through them by standing in your truth or you can go to bed and never get up. Tough love....but there are no other choices.

Find a caregiver group in your community. They are available free of charge at almost every living facility and hospital. They will show you what is coming down the pike, so to speak.

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Thanks. She is on a Tylenol regiment. I will ask about a planning meeting. So much to think about and I only want her to be comfortable. Like my sister said, we could make the change to Pallitive care and she may complain about that. She still calls ever night saying, Damn you for putting me in here. I just don't know. Will talk with the social worker Monday morning, and see if my sister want's to sit in on the conference.

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Cheryl, I would consider having a psychological eval and see about any treatment for derpession if she is not on anything, or med changes. She might be undertreated for pain. My mom would always just not do therapy rather than mention she was in pain, and they made her Tylenol dose regular instead of PRN which helped quite a bit. You could ask for a care planning meeting with facility staff. You might not have to have full time home care if she can't walk but could transfer with one person assist. You would need a doctor's recommendation if you are going the hospice route. Someone who decides to just sit around and take meds may end up hurting worse (especially if they have arthritis) or at least feeling worse psychologically than if they tried to stay a little more active - not necessarily full court press and high intensity, but just trying to move a little and do a little every day instead of being totally passive. I remember the one time my mom decided to let someone feed her and honestly, that one time she found it nice not to have to make the effort, but then you could just see the depression setting in right there. She did so much better to take a touch more Sinemet so her tremor was better and she really could do it herself without spilling so much that it embarrassed her. Just my $0.02. Don't be afraid to ask if it is in fact time for a hospice approach, maybe it really is and no one is stepping up to tell you. Hugs - it's a sad and difficult time.

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well today's visit was not very good. Mom was not happy, well never is, but kept repeating how she wished she were dead. It is VERY clear that she is not happy in this life. I asked her if stop therapy and change you to where they won't make you do anything you didn't want to do. I said they would continue your regular medicines but also give you more pain killers so you are very comfortable. Her eyes got big and said YES, I WOULD LIKE THAT. She then said I want them to kill me. I told her well no one can kill you, but we can make it easier for you so you are not in pain and don't have to deal with anything. I told her I'd talk to my sister and see if she agrees with changing her status. Of course, my sister always has a million questions and "what if" thoughts. I feel iin my heart my mom wants to leave this world.. and not keep fighting to get stronger on her feet. What do you think? I think my best gift to her would be to her stop all the therapy.

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In my area, southeastern PA, there is a wide spectrum in the amount of care an AL will take on. The license allows pretty comprehensive care (with some important exceptions - like life support). It's pretty much up to each facility to decide how "frail" they want to go and/or how many frail residents at a time they can take. The care is billed in levels, defined by an assessment. Here in my area, you could get a private room in a nice AL with the highest level of care for about $6,000/month. The base rents start at around $3,500.
Your mom's condition, age, and development of pneumonia are all pointing towards her staying right where she is, but that said, I've seen 92 year-olds bounce back from some pretty precarious situations. You're better off having a plan in place to be ready for that possibility.

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Well, I should have made that statement more clear about the phone calls - and 40 years' difference is impressive. Don't worry, you will be in your 70s one day. Sixty-five is good and I look forward to my 66th birthday in Nov.

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Sorry ferris1 would NEVER stop taking her calls. She is scared and confused enough wouldn't want to make it worse for her. I limit how often I pick up the phone. Usually I call nurse's station for them to check on her. BTW I just turned 55 and my sister is 47. Lol far from 70's.

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If a person with dementia manipulated BEFORE they got dementia, they will be repeating the same behaviors now that they have dementia. Get it? Stop taking her calls, be firm, and decide now what your next step will be. She is only going to get worse. Dementia is a terminal illness and at 92 yrs. she probably would not survive another surgery should she fracture another bone. You and your sister are doing the best that can be done, and she knows the buttons to push. If she is 92, I'm guessing you both are in your 70s, and you still are allowing mother to control you. Stop it! Get your lives back...

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Thanks 4thdaughter. That's what I wondered if I didn't make the plans now for the nursing home if there were no room available, then what? I sort of thought too that if I said I was planning on keeping her there, they might stop therapy and move her to the NH part of the facility.

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Cheryl, if your Mom has developed fluid in her lungs she will not be coming out of the nursing facility for a while, if at all, sorry to say. If it gets to the point where she is released from therapy, talk with the NH facility about her continuing to stay there. Once she comes out, it is a long process (waiting list) to get back in to a good NH.

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Thanks everyone for your replies. I guess didn't make the part clear about bringing her home to live with me. When she is done with therapy and they release her... I was wondering if I should try to care for her back home, but she would only have money for a few months... and when that ran out I'd then have to put in her a nursing home. I didn't know if it would make her happier for a few short months or just keep her there at the nursing home after the release from the therapy. I thought AL was for people that could function to a point.. unless there are different types that I am not aware of??? I do believe mom is depressed. I am in constant contact with the nurses and relay all the things mom says. She developed fluid in her lungs and is having a hard time breathing. It's horrible to see her having to go through so much. I really wished the Lord would take her and not let her suffer any more.

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First of all, set up a regular time you'll talk to your mom and then don't take her calls at other times. She's in a safe environment, so she doesn't need to be calling and crying to you multiple times a day. If she breaks that calling/crying cycle, she just may be able to focus on her therapy and strength.

I'm sure she'd rather be with you, but with her medical history, she's better off being in a facility with 24/7 care with a change of shifts (and not you on 24-hour care). It's tough, but you're doing what's best (safest, healthiest) for your mom. I'd start looking for assisted living places for her now, so that when she's done with rehab, you have a good place to take her.

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She is in an unfamiliar environment which confuses someone with dementia more. What seemed to help my mother in law when she was in rehab was to have a calendar which we checked off everyday. The expected date was circled. Not sure how advanced your mother's dementia is but tell her the only way she can come home is if she gets stronger. If you can find a non agency live in you may find it much less expensive.

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Cheryl she's "not getting her way". My mother, a life long manipulative, mean and spiteful narcissist, went on and on and on all her life until she got her way - people just rolled over to shut her up. Now she's in a NH she's not the centre of attention, no-one jumps when she snaps her fingers or kowtows to her 24/7 and it really pisses her off. No-one cares if she pouts or does a hissy fit. Just before he passed my father (who she treated like dirt) said "Your mother will never be satisfied with anything" and after busting his chops for over 50 years to cater to her every whim he was an expert.

I could spend hours telling you about the ghastly things she's done over her life but I'll leave you with this. Long ago my mother got a puppy weiner dog and insisted it slept in their bed. My father said "No dogs in the bed" so Madam moved herself and the pup into the spare room. For the last twelve years of his life my father slept alone and went everywhere by himself. He only had to look at her sideways and she's slap his dinner on the table and wouldn't speak to him for weeks for some imagined wrong doing, He died a lonely broken man. I so wish she had died back then and I could have cared for him. Some people are just pure evil.

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Something tells me that if you take her out, it'll be a lot harder getting her back in there...

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Have a long talk with the PT staff about your mom's prognosis. If she gets on board with participating in rehab, do they feel she could be 'AL ready' at the end of her time there?
ALs vary in the amount of care and supervision they provide. Some require residents to be pretty independent, others accept pretty frail residents (within the boundaries of their license). An AL is much less expensive than a SNF and a fraction of the cost of 24/7 home care. Your mom's money would last longer and it would be a much better environment - home is boring and lonely, SNFs are filled with mostly very impaired residents. At an AL, she could form friendships and have a social life.
Make sure you and the staff have the same message – she WILL NOT be leaving there until she progresses enough to leave. You may want to keep the discussion about where she's moving to until she's closer to discharge.

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All of the previous suggestions are good. In addition, make sure that she is getting good care by making visits at different times of the day. Sometimes a patient with dementia will complain and everyone attributes it to the dementia, when there may be something else going on. Don't forget you are your Mother's best advocate.

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Your Mother's 92 yrs old.She's scared and affraid to be made to stay in the center for good.That's normal and who wouldn't be affraid of that.Hospitalized 3 times in the last year I would say it's time to find her a home.

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Taking your mom out of rehab and bringing her home only to put her back in 3 months later should not be an option. She's there now and you can work with the facility's social worker on keeping her there. If you bring her home you will never get her to voluntarily go back and you will have to wait for some major health crisis that puts her in the hospital in order to get her back into the facility. On the practical side, your mom can't afford to live at home anymore because it would cost $13,000/month for around the clock care.

As for what to do about the phone calls, that's tough. I understand. My dad did the same thing. He wasn't begging to come home as much as he would call at midnight and tell me he couldn't find his pants. We had put his cell phone in his room and I would buy minutes for him. Once his minutes ran out I didn't buy anymore. Harsh? Maybe. But as you said the daily phone calls were killing me. And my dad couldn't work the phone and he'd call and I'd hear him cussing in the background because he thought he couldn't get me on the phone and I'd be screaming into the phone: "DAD!!!! DAD!!!! DAD!!!!" It was a mess. If he needed to reach me he could go down to the nurses station and they would give him the phone but he never did this once we let the minutes on his phone run out. I was at the NH all the time and I'd call him when it was convenient for me (keeping in mind meal times and change of shift). This pacified him and he could no longer reach me for "emergencies" like losing his pants (he was probably wearing them). And the NH was good about calling me if something was going on with my dad.

Definitely get your mom evaluated for dementia and start a conversation with the social worker in the facility about how to keep your mom there. Don't let your mom know you're doing this until there are solid plans in place. Deal with one thing at a time.

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The first step should be to consult her doctor. The doctor will have seen this before and know how to proceed. Perhaps he can prescribe an anti-anxiety medication to help take the edge off her stress. The suicide/wish to die phrase could be a manipulation or be real depression. She needs to be evaluated by a trained physician. Once you get a doctor to help advise you, you will feel much better. Don't do anything until you see a doctor. Good Luck.

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Has your mother been diagnosed as having dementia? If no diagnosis has been made, the first step is to have her evaluated by a doctor who specializes in geriatric care. In the meantime, do nothing - do not take her out of rehab; Mom should stay as long as they will keep her. If you remove her you may jeopardize future choices.

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Is it the dementia or is Mom trying to manipulate us to get her out of the rehab center?

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