Joined: Sun Mar 25, 2012 3:56 pm
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?
Joined: Fri Jan 15, 2010 9:33 pm
Re: move mom in???
Welcome, and yes, many, many of us have been through this. I'd suggest you read as much as you can on this forum to get some ideas of what people have done in similar situations. You can look for postings that will speak to your most immediate issues, and you can also do searches of key words.
I didn't move my dad, and looking back on it, I wish I had moved him after he had his first and largest decline in abilitites. I know how hard all this is so I hopr you 'll visit this fprum frequently for support and info. Lynn
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.