Independent MIL with dementia refuses help. What is our best option? - AgingCare.com

Independent MIL with dementia refuses help. What is our best option?

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Hello all-

First, thank you all for the letters and comments in this section. I have read through many of them and found comfort knowing that I am not alone. I have been sad to hear that many of you have much greater burdens than I do.

My MIL (mid-80s) has dementia. As many with dementia, she has anosognosia. She is a very bright woman who graduated from an excellent college at 19 and has been successful with her life. She was widowed young, and has always taken great pride in how she has lived independently, having a career, learning to invest and doing well with money. She has a house on Long Island and an apartment in New York City, where she usually lives for the conveniences (she eats out every meal). In the past year or so, she has become quite frail, and walks very slowly. She is doing little besides playing solitaire and watching TV (when she can get it - she often messes up the remote settings).

She has terrible hygiene problems. She has had one shower in nine months (when she visited us via plane, wheel-chaired back and forth from gate); unfortunately I didn’t get her to the salon to get her hair washed. She is fearful of the bathtub-shower at her apartment, but thinks she uses the stall shower at her house every couple of weeks. She doesn’t recall that she no longer really goes to her house (she considers going there all the time). Her body odor is very bad. Her teeth look terrible. She doesn’t change her clothes often if at all. She is ignoring her mail. (Her daughter was helping her with the bills until she became convinced that her daughter was after her money. At the time her daughter stepped in, she hadn’t paid property taxes or several months of rent.) She doesn’t seem to be taking her blood pressure medication. (When she visited me I got her to a clinic, and her blood pressure was very high.)

It is very difficult to get her to go to the doctor, and she frequently cancels appointments. We tried to get her an aide and it did not go well. (She forgot who the aide was when she went out of a bit leaving the aide to wait for her, and for weeks after was worried someone was following her. There is a long story here of how we tried to get the aide in as an assistant to someone else as she would never have accepted her. ) A housekeeper we tried was told not to come back as my MIL thought she might be stealing or getting into her things.

So, finally, my question. Is it better to just leave her alone? My husband is worried that it may kill her to attempt to take guardianship (which I am quite sure we could get). He thinks if we leave her alone, and she gets herself in enough trouble, that she may have some recognition of needing help. If she dies, that it will have been on her own terms. My SIL thinks maybe we should come out and all confront her as a family – telling her she has to accept help (maybe given by a care manager) or we are starting legal proceedings. I am leaning towards wanting to going directly into getting a guardianship and putting her in assisted living, where there is a chance she could thrive with companionship and a greater range of activities.

One last thing, she is frequently very anxious. This is one thing that motivated her to come see us – she was fearful of being followed and that her daughter had nefarious plans for her. At that point she was sometimes talking to us eight times a day. When she visited us, after exclaiming how happy she was to see us and taking a brief shower, she immediately decided she wanted to fly back to her apartment (she ended up staying two nights rather than the week she originally planned). She was confused about where she was and who lived here. Sometimes it wasn’t clear she was recognizing us (she would ask her son where her son was, for example). It totally discombobulated her. The same thing occurred when she visited her daughter’s very familiar home just for a day. When she returned to her apartment, she had to call us every morning to ask where she was and where we were for over a week. She sometimes becomes anxious for her safety.

Now, every time she talks to us we tell her we’d like her to move into assisted living. After she canceled several doctor's appointments, I also told her unless she sees a doctor we're considering legal proceedings (I am worried about the BP). She is calling less frequently and discloses less to us when she does call. Apparently she has started calling her grandchildren more – they are not quite sure what to do with her and her very repetitive questions and conversations.

Sorry this has gotten so long. I appreciate any input.

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Her orientation to her surroundings isn't the only concerning issue as you noted. The hygiene, paranoia, and financial missteps are all signs that she needs the help now rather than when something worse happens. She may scream her head off at first about what you have to do. Oh well, that's part of what you put up with when you do what you gotta do.
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Thanks for the link. There is some good information in there and I would encourage anyone reading these posts who is also wondering about the costs to take a look at it.
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Geo123, here is an article about the costs of guardianship: wills.about/od/planningfordisability/a/costsofguardian.htm.

Also, if the person with dementia has an estate, I think you can ask the court to award cost reimbursement. Ask the attorney to be sure.
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Let me clarify something. She does usually know where she is, in fact, she frequently goes over the details of how she gets to her Starbucks and neighborhood cafe from her apartment. It is when she goes somewhere else that she gets very confused about where things are and who is who. The confusion about who is where remains for a while after she gets home. When she is in her routine surroundings doing her routine things, she is much better.

I hear you on the guardianship. I think that may be right.
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Get guardianship now. Your husband is, unfortunately, in denial and is not going to be of much help. Frankly it seems likely the time to take action came some time ago. If she's in her own home and doesn't know where she is, how long do you folks expect her to get by on her own?
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As a Guardian, let me say this: pursue Guardianship immediately. If she agrees to move to ALF, a week later she will want to go somewhere else. Without Guardianship you can't stop her from leaving. With Guardianship, she can't leave without your signature. It's the safest solution. Without Guardianship she can appoint anyone POA, including the garbageman. Without Guardianship, she can refuse to take medications. Sure she will be mad about the hearing, but the Judge will go ahead and decide the case without her cooperation. Shortly she will need a Memory Care Facility. The only way to get her there is with Guardianship. You won't regret it.
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I was reading this as I'm in a similar situation. Why is guardianship so expensive? And, who pays for it?

I ask because I was talking to a lawyer regarding POA versus guardianship, but neither any of my relatives nor myself has $8,000 for this.
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Thanks, Everishlass.

One way she oriented herself at her apartment was to see that her belongings were there. That is what I am hoping will happen with an ALF.

I have talked to her moving, she says the same thing she says when we say we think she should go to the doctor, variations on "I'll think about it."

Re POA - it's not clear. She says that she has all that taken care of, but nobody knows who it is! I don't know if she trusts anyone enough to give it to them at this point - she turns suspicious very easily.

She still clearly has some of her intellect - the idea of putting her in a nursing home is or memory care unit is painful, I just don't think she's there yet. She would scream bloody murder for sure.
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A family meeting is always a good idea but not when the person you're discussing is there. You won't be able to speak freely and little will be accomplished. Meet together without MIL and decide what to do.

If your MIL stays where she is and has an accident that won't prompt her into realizing that she needs help and thus accept it gracefully. A mishap will make the dementia worse and you'll be in the same situation you're in now only worse.

Assisted Living is an option but assisted living has limited help available and it may not be long before your MIL needs full-time care and a NH. In AL your MIL will still be on her own left to her own devices. Moving her will be more traumatic than you can believe and again, she may not last long in that situation. She may need to go right to a NH. And from what you said about when she comes to visit or goes to someone's house she's very confused. Now picture her like that in an AL apartment.

You can wait until she has a mishap and use that time to get her into a nursing home. This is provided she injures herself and needs to stay in the hospital for a while.

Or there's guardianship. It costs about $8,000 to obtain.

Has anyone approached MIL about going into a facility?

Does someone have POA? If not, someone needs to get POA as soon as possible.
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