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 I'm new here 
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Joined: Sun Dec 02, 2012 9:01 pm
Posts: 6
Post I'm new here

My FIL was apparently diagnosed with LBD a few years ago. My husband and I were not aware of the diagnosis, as my MIL didn't specify, she just said part of his diagnosis was dementia and it wasn't AD. My MIL died earlier this year and my FIL recently fell and fractured above his knee replacement, so landed in the hospital and now he's in a short term rehab. DH and I both hold DOPA for him (financial & medical) - he did this a year ago when my MIL became sick so we could take care of his finances for him - and that's how I came to learn his LBD diagnosis last week at one of his doctor appointments I was at with him.

His doctors are pushing for us to place him in a SNF permanently, but honestly, he's not at that point IMO - he is very cognizant and still physically doing well.

We're just getting as much information now as possible so that we can understand what it will require to have him home with us (with 24/7 caregivers) and what to expect in the coming years.

Thanks for welcoming me here!

Mon Dec 03, 2012 9:14 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I'm new here
Welcome to the forum! Sorry you have to be here but glad you have found us. I agree with you that it does not seem that your FIL needs a SNF at this point, although it's never too soon to start exploring options. If he can afford 24/7 caregivers, he may never need a facility. There are cases where behavior makes it difficult to keep them home but in many cases these problems never arise. In my husband's case, I became physically unable to manage his care as he became both physically dependent and uncooperative and 24/7 care would have cost even more than the nursing home, and we could not afford it. God bless you for caring for your FIL!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Dec 03, 2012 12:20 pm

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: I'm new here
Welcome to the forums! My mom was diagnosed almost two years ago and we've been able to keep her home so far. She has had a couple of illnesses that have required hospital stays but once the infection was recognized and she was started on antibiotics she was able to return home. My hope and plan is to keep her at home for the duration, but if there comes a time when I'm not able to care for her at home we will look at other options.

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Mon Dec 03, 2012 3:57 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I'm new here
Welcome to the LBDA forums,
if you do a search for specific questions you may have I am sure it has been a topic before. Please feel free to ask questions and when you do, go to the area that best fits the question and I am sure you will get a answer !

Irene Selak

Mon Dec 03, 2012 7:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: I'm new here
Welcome, and I'd agree that looking into living situation options before you need them will make your life a lot easier later on. It's great that your FIL doesn't need the level of assistance of an ALF or SNF yet. The big "but" here is that with LBD things can (they don't always) deteriorate over night and it's better to have checked out places, figure out the best fit, get on waiting list(s) while he's still relatively healthy. Then if/when a huge decline in mobility, cognition and other things occur, you at least won't be dealing with "well where do we place him now when we only have a day or two to find a place."
Glad things are not at that point yet and he and your family can still have some "normal" times and activities. 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.

Tue Dec 04, 2012 6:25 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: I'm new here
Welcome, Rah Rah. That is my grandson's name for my sister.

You have found a good resource here.

Take care,
Pat Snyder

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Fri Dec 21, 2012 12:14 am
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