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cherylh310 Asked March 2014

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

Mom calls home constantly crying and asking why I put her in there. It's mentally exhausting trying to reassure her that she is there for therapy and once she gets steady on her feets, she'll come home. Mom is 92 and has been hospitalized 3 times in the last year and half. She moved in with me last year and things worked out great. If she can't walk again, I don't know if I can let her come back home. Such guilt over having to make this decision. Even if I decided to bring her home and paid for 24/7 care, the expense would be $13,000 a month. I would only be able to do that for 3 months as mom's money would be spent. I hate having my mom calling and crying to "get me out of here." My sister and I tried to explain that she is in "rehab" but in a few hours she is upset again about being there and constantly talks about how she wished she were dead or wants to kill herself. It's so stressing. Mom has never been one that liked any change or not getting her way. We wonder if this is the dementia or is she mad because she can't get her way. I don't know if I should try and bring her home and when money runs out, then put her in a nursing home.. or would it be even more frustrating getting home and going back. Just so confused and feel helpless.

BarbBrooklyn Dec 2014
Start by call in her doctor and see if he will order it. Call the facility and see if the have a bed.

Nanaof3boys Dec 2014
I just searched with a question and got this site. I have read the comments and they sound pretty much like what I am going through.
My mom recently began having Dementia (forgetting things, repeating things, etc.) She is 85 years old and lives by herself. She is very independent and has done everything around her house on her own. She even cut the acre of grass she has, when my husband didn't get there before her. She is very strong willed.
About 1 month ago, she tripped indoors and broke her humus bone in her left arm. They had to put her in the hospital for a week and insert a titanium rod and pins. She was supposed to go straight to rehab, but when we got there, it was horrible. She cried and cried not to be left there. Needless to say, I took her to her home and scheduled therapy to come to her. They came for a while and then ordered her to go to rehab as an outpatient. She has been once, but then her right knee caused her a lot of pain, and therefore they scheduled therapy on her right knee. Now she is saying she is tired of all this therapy mess and she will just stay at home and rot and not go anywhere. Here's the problem. I should have never brought her home from the rehab facility. Second, the outpatient rehab is getting tired of her canceling her treatments, and thirdly, someone has to take her to all of these appointments (my sister and I have full time jobs, and my husband and I already have his dad living with us). My sister is no help at all. I live 1 and 1/2 hours away from mom. She lives 3 miles away!
Does anyone have any suggestions how I can get my mom back into the inpatient rehab facility without having to hog-tie her? I need help! Please.

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BarbBrooklyn Mar 2014
Cheryl, I so respect your trying this. What have your mom's hospitalizations been for? Does she fall? Get utis or other infections? The fact that she's got fluid in her lungs, dementia, intermittently wants to die is an indication that she's become quite frail. Does she want to live this way? Is she currently on antidepressant therapy? Talk frankly with her doc and discharge staff. And then follow your gut. Godspeed!

cherylh310 Mar 2014
I won't have ANY REGRETS after this last try.

cherylh310 Mar 2014
ba8alou.. I have a feeling you are right, but I am going to give it one last try... even if only last a month. This is my last effort to make mom happy, but if something else happens that she is sent to the hospital, no more for me.

BarbBrooklyn Mar 2014
Cheryl, this is only going to get worse. If your mom is in a facility, you can be a loving daughter who visits her and advocates for her. Was in exactly this situation two years ago. Mom is much better cared for by the professionals.

cherylh310 Mar 2014
I do work full time. I was told mom can walk with her walker, but it's her attitude that is the biggest problem. I had a paid helper from Senior Helpers coming in 5 hours a day while I was at work, but I will need more help I feel this time around. I am paying $19 an hour and the helper told me she was only getting $8.75 for her time at my house. That in itself makes me sick. I am hoping to hire some more help either through a website that advertises caregivers or through a friend that works at a AL facility and recommended someone that needs work. I really want someone to be here at night while I sleep so they can keep an eye on mom and help when she needs to go too the bathroom. I am wanting about 18 hours of help a day. I really don't want to lose my life helping mom to be able to stay at home with me.

IsntEasy Mar 2014
The fact that you're surprised that your Mom could be discharged within 10 days, is concerning. If your assessment of your Mom's condition is that her care in her current state is more than you can handle at home, push back. Have a meeting with the social worker. Explain exactly what level of care you can give (do you have to work, do you have any physical limitations yourself...etc...). Unless you push back and advocate for yourself in this process, they'll just load her in your car and wish you good luck!

cherylh310 Mar 2014
Mom seems soooo depressed. I told her she's almost done with therapy and she doesn't seem excited, or at the very least, pleased that she will be going home. She talks about dying all the time and getting out of there. I though telling her she's almost ready to leave would change her mood, but it hasn't. I wonder if I am doing the right thing bringing her home. I asked her what is that you want, to get out of there and go home or just die? I just don't know how to help her any more and her attitude and mood is making me second-guess my plans to bring her home.

cherylh310 Mar 2014
thank so much for that information. Will inquire tomorrow

cherylh310 Mar 2014
really? I didn't know that Thanks so much

BarbBrooklyn Mar 2014
Talk to the discharge people. If yhe doctor writes a script for it, it's covered by Medicare.

cherylh310 Mar 2014
I've been researching all the help for months.. There isn't any clear cut help that is free. Everything is a waiting list or tons of paperwork, and it amounts to a few hours a few times a week. If you need 24/7 you'd have to have 10 different people coming and going in your house. I looked at the recommendation of Home Health. All I see is it's a free agency that helps you find help you have to pay for.

BarbBrooklyn Mar 2014
Start talking to the discharge folks about what she's eligible for when she's discharged.

kmonksmsn Mar 2014
You might want to see if she is eligible for Home Health to start with. The nurses and therapists could be helpful in getting you set up.

cherylh310 Mar 2014
Mom is supposed to becoming home in ten days if all goes well. I was very surprised with news. This evening nurse called saying because they are treating for pnemonia with antibiotics they think she now has c Diff. Hopefully all that will get under control. Trying to line up my help for when mom gets court.

cherylh310 Mar 2014
Well I hope she returns to the way she was before going into the rehab as I found out today she may be released in 10 days! Who knew???? Before I was worrying about her dying and/or being permanent there, now I have to get ready for her to come home. I'm keeping my fingers crossed.

Stephanie777 Mar 2014
Your situation sounds almost exactly like mine. My mother was in a rehab for 2 weeks and acted so badly they finally asked me to take her home. However, she has been diagnosed with dementia from a MRI of her brain. Along with dementia she has a fear of unfamiliar places. When she was back home again she very slowly returned to the way she was before rehab. Don't know if this will happen with your mom. I would suggest defiantly have her tested for dementia. Hope this helps

cherylh310 Mar 2014
That's what I thought, they didn't supply a phone automatically, you would have to pay for one.

kmonksmsn Mar 2014
Even if she can have her own phone, aren't you the one who pays for it?
When my cousin was in a NH, there was one phone, in the lobby, for patient use.
It wasn't very convent for patients to make frequent calls.

cherylh310 Mar 2014
Thanks everyone for your thoughts.. it surely does help that I (and my sister) are not alone. Oh really, I didn't know they had phones in the nursing home too. Oh boy...

anonymous179890 Mar 2014
When moved to a NH she will be allowed to have a phone and the daily screaming, demanding and picking fights calls will continue until you become seriously ill. I eventually had to change my phone number.

cherylh310 Mar 2014
I don't answer the phone everytime she calls... maybe one out of four I'll pick up. Gosh if/when she is moved to the nursing home facility, she won't have a phone. She'll really be mad.

stevensmom Mar 2014
It's OK to not answer your phone. This might sound mean or hard, but sometimes, you just have to take care of yourself. I liked Blannie's advice to start looking for a safe place for your mom to go when rehab is over. Best wishes and stay strong!

norestforweary Mar 2014
Cheryl very common for some one with dementia to change their "talking". Its like a roller coaster ride sometimes as nothing is constant. Something that helps me with my MIL is tell my self wait a while, this will change, and it does.

cherylh310 Mar 2014
Thanks everyone for your input and your own heart breaking experiences. It really helps. So yesterday I was convinced mom wanted to stop therapy and just die.. and then I told my sister that we should perhaps move to that next step. Both her and I were very teary-eyed and upset with that prospect. My sister didn't want to go visit mom today fearing she'd be just crying. So today after many, many, many calls, I decided to stop in and see what all the drama was about. She seemed fine... her aides said she was doing well, but had a few moments of agitation. By her calls, it sounds like life or death. Again mom and I talked, heart to heart. I felt last time she told me what she really wanted, but today she said she wanted to go home and what did she have to do. I told her to get her therapy so she could walk. We talked indepth about what happened to her that landed her there etc. I keep thinking mom really gets it, but now I realize she changes her thoughts from day today. I called my sister to tell her about my visit. I said you know we should just go with the flow and not make any changes in her rehab therapy. I thought mom was really with it when she told me she wanted to just die, but now I don't think so. I think we should just let things play out and make no decisions. Well on a good note, my sister and I aren't all boo hooing worrying about mom dying now. So now we just have to put up with all the calls about how bad things are. I am not sure which is the better trade off, but I'd rather have mom bothering me then talking about death. lol

BarbBrooklyn Mar 2014
When mom calls "you" didn't put her there, the doctor did. The doctor says she needs to be there to get stronger, be able to walk again. Long term plan, work woth sw dept and focs to evsluate her physical and mentsl meedd, for mow, she's in a bed..don't, ove her unless you absolutely have to

BrooklynGirl49 Mar 2014
I am so glad I found this site. If we are all in the same boat, I wish we could form a support group off this site. I am in Millburn, NJ and mom is in Florida. Moved her from rehab to Asst living yesterday. It is a very nice place for $2900/mos. Unlike NJ where it can costs $6K/mos or more. She complains but knows she must stay for a while. Wants to move back to her 2nd floor walk up condo. May never happen.

msdaisy Mar 2014
Cheryl know you are not alone!!! We went throught the exact same thing when my Mom was in rehab after a recent hospital stay. She was only in rehab for a week and that week gave us time to find a nice assisted living facility, it basically bought us a little time because we knew our Mom couldnt live alone anymore and I agree with the others, once she goes home you will NEVER get her to voluntarily go to a facility. Do it now. I had so many phone calls from her while she was in rehab, screaming, crying, cursing me out, accusing me of "putting her away and I'll whats coming to me as a result." It was beyond stressful and I cried so much I think I permanently damaged my tear ducts. It was intense and probably one of the most stressful times of my life. In my head I knew I was doing 100 % right by my Mom, I wanted to keep her safe but my heart was breaking hearing how unhappy she was. Let her stay in rehab where they can help her while you make other arrangements, its for her safety and your mental sanity. You have to take care of you to make sure you are strong enough to handle the aftercare. Good luck!!

DGinGA Mar 2014
I don't really have much new to add. My Dad had to go to a NH for rehab after an injury, and that's when we realized he had dementia. He was so disoriented that he didn't know where he was or who he was. He'd call and ask us to come get him because the convention was over and he didn't like this hotel. In the dining area he thought he was in a restaurant with really bad service. I tried to join him for lunch each day and he begged me to take him to a different restaurant - preferably the McDonalds across the street. Anyway, he was much better once we got him home in his own familiar environment.

I would definitely talk to the NH staff, but I suspect your mother's behavior is emotional manipulation more than dementia. The staff has seen this all before, and they are better equipped to make an evaluation. If it is dementia or depression, they canget your mom on the appropriate meds.

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