Mom stuck "in between" and I don't want to go visit her. Any advice?

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My mom 89 with dementia was still living independently, but attending day care and it was getting difficult to maintain. We were on the cusp of arranging additional home services when she fell and broke her arm in January. After the hospital she went to rehab. In the midst of this I had to have immediate surgery and ended up in recovery , and was somewhat checked out when insurance ended her rehab coverage (a week earlier than expected). We were arranging moving her to a different nursing facility but ran into a quagmire of paperwork, and they would not take her. My days have been spent on phone calls and tracking down resources trying to manage this. She has community medicaid and because of extending her time at rehab it needed to be converted to skilled nursing medicaid. So now she is stuck at the rehab, it's been 6 weeks, and it seems that she is much more confused in some ways, but still fairly aware in others. They do not have a bed in the memory unit, but I also am not sure she needs that level of restriction. She is still very good with her ADL's and very aware that there is nothing physically wrong with her, tho is unaware of her mental deficiency. I found out last night that they put her on an anti-depressant at night, and that she tried to escape yesterday so they also put a bracelet on her. If I visit her she thinks she is leaving and gets very agitated, but if I don't visit, no one does, and I think this is making her worse. One of the assisted living places agreed to come interview her (she was accepted in the past but then declined to move in), but I just don't know what the best environment is for her, and the rehab only see her as an agitated resident, and that floor does not have the resources to keep her occupied. I have been told that no one will take her because now her skilled nursing medicaid is pending BUT I need to figure out what happens if she does get approved for the assisted living, we don't have the resources to cover the additional time she has spent at the rehab facility but everyone agrees that she should not go home and there is no way to know if daycare would work out again. My brother lives several hours away and has his hands full too, and tho we are working together, there is not a list of people to visit her. I have continued to pay the "friendly visitor" but she just broke her foot. I am supposed to go back to work on Monday and know I have a bunch of phone calls to make, but it is the visiting her that I am really avoiding and just don't feel up for it emotionally. They said she asks them to call me all day. I told them it was okay to call me, I never get an answer when I call her or the nurses station, (another issue). Prior to this in her current state of dementia, our relationship was limited to checking in during the week, taking her out for a few hours on the weekend, very functional. She has become very very repetitive since the hospitalization, same questions every minute, sometimes things stick. The social workers say that people in my position are trying to solve things due to guilt, but it is also trying to figure out what is best at this point. Of course all she says is that she wants to go home, and I know I should just buck up and deal, but I can't seem to work myself up to it.

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many thanks - i downloaded the book and will continue to reach out to resources, as we all do. Good advice and thank you for the support!
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Contact your local hospital and speak to their social worker. They have resources at their fingertips. You mentioned she declined to go somewhere, which indicates to me no one has a POA? At her age and health issues, I'm really surprised if this is the case that you don't have one. Best of Luck.
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I don't have great advice for you, Maggie, I just wanted to say I feel for you. I was exhausted just reading your explanation of your situation. I thought 1nephew had some great advice. I hope you can figure out a way to make sure your mom gets the best care without wearing yourself out in the process. {{{Hugs}}}
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I have been through much of what you are going through and I empathize. I hired a semi-private geriatric care manager (she is affilliated with a senior services agency & charges only about 60% of the going rate- and is vetted by them) to help with particular things and she helped me realize that it was completely reasonable to be overwhelmed. There is so much to attend to, usually without benefit of enough information. With my mother, it made a huge difference to have someone (paid to) be with her, if only a couple hours a day, the same time each day. My sister and I couldn't provide that consistency. It cut down on her confusion & disorientation, & her feelings of fear, isolation & loneliness.
You and your mother are completely entitled to be part of the care & treatment- whatever unit she is on. If your mother wanders, it's appropriate to ask what measures they take to keep her safe & engaged to cut down on her attempts to leave the unit (like activities). Also, the adjustment to new surroundings is a very difficult one for people with dementia. Sometimes the increased confusion subsides, and sometimes the increase in dementia becomes the new normal. Do you know why your mother is being given medication at night (probably intended to sedate- some anti-depressants can be used that way), and whether they've determined it to be effective? Nighttime agitation, as well as pain, were big problems for us. We needed to ask questions many times to get answers, and then insist they accept our input.
Many hospitals provide white boards to tell patients who will care for them on a given day or shift. We brought our own to the nursing home as we didn't see them. We change it daily with day of the week, date, and anything we know that will occur that day (we include when we will be there). My mother's favorite placemat is on her portable tray table, her CD player is on her night table (music can be so helpful), & she has a newspaper subscription. So what if she doesn't get past the front page- the ritual is important to her. She keeps her cell phone in her pocket at all times; she no longer knows how to make calls, but she almost always manages to answer them. It's her lifeline to her children & her sisters, & holding it provides her much comfort. At night, we place the call button under her hand. The early months in this facility were horrific, in part because she could not learn to use the call button. Even when my sister or I were there and called for help with the bell, we sometimes waited up to 30 minutes for help with toileting. We did it, as well, but at times 2 people were required. We'd insist on help after 10, but would be told the aides were all at dinner or helping other residents. When my mother was by herself, they would claim not to hear her calling for help (to go to the toilet), so like a toddler desperate for a response, hoarse from shouting, eyes swollen from crying, etc., she'd manage to get her body half-way off the bed...it was hell. She did not yet "know" that she could no longer move independently, or stand without the support of a walker. The Unit Manager's answer to everything was to blame the resident- and lie. I went to the administrator, who offered to move my mother to another unit. We did move. There's a new administrator now...but I still have unfinished business with that dreadful manager. She must be held accountable.

I have found that the more I understand about dementia, the less overwhelming things are for me emotionally- like when my mother screams "Get me out of this place!" I recommend "Learning to speak Alzheimer's" by Joanne Koenig Coste. It's applicable to other dementias, & it has been incredibly helpful. I've also found great stuff in other parts of this website. It is very reassuring to know that others have been there- and found some answers.
As for medicaid status, we were advised that the "pending" status would be a problem, but that wasn't our experience. It's so hard to know who to listen to, & how to evaluate what they say...but keep looking and asking questions. Maybe consider concrete ways your brother could help. Support is great, but support and help are better.
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Maggie- I'm so glad your visit went well. Hope she'll settle in and be happy there.
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Thank you, it was okay, I gave her a haircut and joked around with her. They moved her to a different unit today, I hope it will be supportive.
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I am sorry for your situation. I agree it's hard to face mom and her request to go home, but she's desperate to see a familiar face. It will calm her to see you. When she asks to go home, you will have to make up excuses to stall. Maybe when you get better, or the doctor needs to run more tests. But do visit her. She must be frightened being all alone in a strange place.
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