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 Introducing myself 
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Joined: Fri Jul 23, 2010 5:49 pm
Posts: 1
Post Introducing myself
Hi, I am a younger sister by almost 9 years) of a 67-year-old sister who was diagnosed with LBD two years ago. She has PD. I know there is some disagreement if they are one or on a spectrum or whatever. Anyway, I am her caretaker. Her daughters live far away and both have situations that preclude them taking larger care giving roles now. My sister lives in an independent living residence but gets some assistance but may soon need more. She has been pretty stable but has just lately been showing increasing symptoms. Her money is limited. I'm worried about the transition from where she is now to something else - since assisted living would rapidly deplete her funds, she would then have to move to a skilled nursing facility, I suppose so that Medicaid could kick in. I'm just not clear on what to do and when.



Fri Jul 23, 2010 6:04 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Introducing myself
Welcome Karen. Sorry about your sister and she is lucky to have you to help her. If I were in your shoes, I'd go to her doctor and find out how much help s/he thinks your sister will need and how soon. The dr. might have an idea of the trajectory she is on, however, with LBD and some other brain disorders, the declines can be precipitous (I know about this first-hand with my dad). You should start looking for an ALF and see what the availability is and if any of them accept Medicaid. Some people on this forum live in states where there are such facilities, some of us don't. I'd get some idea of where she will need to go before it becomes an emergency situation. Are either of her kids able to have her move in with them and they do the caregiving? Does your sister have long term care insurance?
If you can gather some data and make some tentative plans for her care for the near future, you won't feel as overwhelmed when one of those big declines happens.
I'm glad you found this forum - there are lots of nice, supportive and informative people here. 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.

Fri Jul 23, 2010 8:20 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introducing myself
Hi there. I didn't realize there was any disagreement as to whether PDD (LBD) is on the same spectrum as PD. They are both Lewy body diseases and most people with PD do eventually get dementia.

I suggest you speak with an elder law attorney who is also a financial counselor, or a financial counselor who deals in elder care planning. This sort of person can best advise you/your sister about the planning for getting her on Medicaid, etc. You can find elder law attorneys from

Fri Jul 23, 2010 8:46 pm
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