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 move mom in??? 
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Joined: Sun Mar 25, 2012 3:56 pm
Posts: 5
Post move mom in???
Im new to the forums. My mom has had LBD for about 5 years, but only officially diagnosed recently. She is rapidly declining, and it has become clear she can no longer live alone. She lives in California in an apartment, husband and I live in New Jersey. We are considering having her come and live with us, but I am feeling overwhelmed by the logistics of the decision, and I am concerned about the impact on me and my family.
I love my mom, and I worry about her all the time now, I know she would be better off with me. But trying to negotiate the issues such as how do I transfer all her medical care? She has medicare, and medicaid, I know the medicare does not change but apparently the medicare has to be reapplied for because it is state program. Right now she does not really use it, but if she needed nursing home care, she would.
I feel frustrated because I don't know if we are talking years or months, I don't know what her prognosis is or how the decline will go, what will happen. No doctor seems comfortable predicting it.
She started with hallucinations, which have increased in frequency, complexity, and recently she has trouble distinguishing reality from hallucination. In the past year she has developed trouble swallowing (chokes and drools a lot) and strong delusions (such as seeing worms in all her food, or paranoid ideas that the visiting nurses are trying to kill her) that come and go. She now drifts in and out of REM state pretty constantly. She has out of it days, where she slurs and doesn't answer much, and days when she seems pretty much like mom, lucid, engaged, cheerful and funny. Her autonomic nervous system is failing, so she ends up in the hospital a lot with breathing or heart problems, blood pressure issues, or stomach motility problems.
Her neurologist told me she was "approaching end stage" and that she could die any day of choking, aspiration pneumonia, or cardiovascular event, or that she could go on for a year or more. Her hospitalist said he would be "surprised if she were still here in 3 months." Her cardiologist said "she is a tough lady and she could go on for another ten years."
I know that 3 months ago, when I was last out there to visit her, she was still driving, and very independent, but I could see the writing on the wall-and this time I went to see her last week, she had gone from acute care to a nursing home to recover from and event and I was stunned at how much worse she is. She cannot drive now, and cannot manage her medications, short term memory very bad, and while at the nursing home developed a paranoid delusion and refused to allow them to give her medications because she thought they were trying to kill her, would not speak to them or cooperate because she thought they were talking about her.
Has anyone gone through the logistics of moving a parent from another state? Her neurologist says if I move her back here with me, she will worsen from the transition of the familiar to the unfamiliar, and the paranoid delusions she gets when in the hospital. I don't want to make her worse! But she can't go into a nursing home, because she develops the delusions and becomes distraught.
Has anyone been through this?

Thu Apr 05, 2012 11:19 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: move mom in???
My personal opinion is that you should move your mom to be closer to you. She will decline some with the move but hopefully her quality of life will be higher thereafter because you will be there, focused on that goal.

Thu Apr 05, 2012 11:35 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: move mom in???
Dear Susane,
Welcome to the forums, I am glad you found a place to read, learn and share.
If you Mom is still living on her own I doubt she is at end stage as the doctor is saying but things could get worse for her with a move but if there is no other option better the move now and not later, you could Call your local Medicaid office and find out how to go about making changes from state to state.

Good luck, you have a lot on your shoulders !

Irene Selak

Thu Apr 05, 2012 11:49 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: move mom in???
I agree with Robin and Irene that a move now is preferable, even if it causes a temporary decline. From what you have said, I cannot imagine her continuing to live on her own, and I suggest it is better for her to move now while she has more cognitive ability than she will later. Also, if she doesn't have powers of attorney, I'd suggest you get her to take care of that as soon as possible, before she no longer has periods of lucidity when she can sign them.

All of this is terrible but your mother is going to need you more as time goes on, so being closer to her will be important. That said, I'd suggest you consider looking into some kind of facility for her if you have concerns about moving her into your home. I'd suggest that you not assume she cannot move into a nursing home because of anxiety and delusions. (My mother is in a nursing home and has both.) If you move her to your home, she may still need nursing home care later, and she would have to move and readjust twice.

The archives of this forum contain a wealth of information that may be helpful to you. I wish you the best of luck with this challenging situation.


Thu Apr 05, 2012 12:54 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: move mom in???
Welcome to the forums. I hope this will be a continuring source of comfort and information for you.

For the immediate concern, I agree that having her close to you is worth the risk of a change in environment. Whether that should be in your home or in a memory care environment or some other long-term care place should be carefully considered. If she is prone to hallucinations, for example, it will not necessarily be better for her to be in your home than in a setting with professional help.

I understand why the doctors cannot give much of a prognosis. We are all, when all is said and done, "approaching end stage" -- but what does that specifically mean for your mother? I don't think anyone knows.

Once you get her close to you, you can address each issue as it comes up. As you are figuring out the Medicaid issue, also begin the search for an expert in dementia care, and specifically in LBD.

Best wishes to you.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri Apr 06, 2012 11:35 pm
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