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 My dad 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My dad
Stacy, I am so sorry for the pain you and Mom are going through. It is indeed heart-breaking.

Lewy has ups and downs. Significant declines can be caused by 3 different things: 1) an infection like a uti, any other illness, such as gout or a bleeding ulcer (to name two that we have experience with), or 2) a reaction to a medication or 3) a natural progression of the disease. If the cause is #1 or #2 the patient can return to the baseline he was at after the illness is treated or the drugs are adjusted. If the cause is #3, then you are looking at a new baseline.

Both times my husband has been hospitalized the therapists who came out to the house afterwards took me aside and told me not to expect him to recover back to his old baseline. But both times he did, though it look longer than they were around and they never saw his recovery so they no doubt still don't understand how LBD can work. I don't mean to give you false hope, but the situation may not be as bleak as it looks right now.

You are wise to start looking at placement options, even if you won't need it immediately. Your dad will probably be released to a rehab center or a transitional care unit (aka "swing bed" in some areas) for a few weeks when he still needs more care than he could get at home but not as much as a hospital provides.

Lewy folks can appear very, very low indeed when they are down with an infection. It doesn't necessarily mean they will stay that way. Do not give up hope!

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

Wed Sep 07, 2011 4:49 am

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My dad

I can tell that you are scared, too. I always use Moma and Daddy when I'm scared, too. You have a right to be scared. Don't try to "be brave." You need to take care of yourself, too. It's going to be a bumpy ride.

A UTI is fairly common among our LOs. Once they start, they seem to come back more often. And a UTI almost always brings some sort of downswing. Though some swing back up, it usually isn't all the way to the strength he had before.

VAs all over the country have a wide variety of reputations. One thing that is kind of good is that they are usually "teaching" hospitals, which means that they have their share of recently educated residents and fellows. It give you a good shot for an accurate LBD diagnosis. BUT even if a doctor diagnoses LBD, it doesn't mean they know everything about it. You (or your Mom) have the right to read your Dad's medical chart. Usually a nurse will sit with you to answer questions. (Though sometimes I think they may be concerned about me adding or removing things, too.) Check your Dad's medications. If you don't know what one is, write down the name of it and use the search engine here. If you don't find it there, someone on the forum has likely had experience with it and can advise you on any concerns you might have.

You and your Mom are now your Dad's advocates. Stay informed about any treatment your Dad receives and ask a lot of questions. No question is foolish. Ask anything you think of. It is important to all of you.

And start looking for a place that you would want your Dad to be placed in, whether you eventually use it or not. Get on waiting lists. Just because your name comes up doesn't mean you have to take an opening if you aren't ready. VAs may be OK, but I don't think I have ever heard a glowing report of whatever long term care they offer. Remember that you and your Mom are suffering through this disease, just as much as your father is. Sometimes the best care you can provide to all of you is to let someone else (nursing staff) carry part of the day to day load.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Sep 07, 2011 12:55 pm

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: My dad
I just found this thread. My situation parallels yours very closely. I'm 45 and have been working full-time but just cut back to 80% because of my mom's Lewy. She's only 67 and was diagnosed a little over a year ago, but we'd been chasing a diagnosis since June 2009. My dad is 78. He was trying to take care of her by himself and finally hired a caretaker who began August 1. She started 3 days a week, but then went to 5 days a week. Finally on Monday we put my mom in assisted living. I have a sister in town, but she was widowed suddenly just over a year ago and has her hands full with her two daughters. I have 2 sons, but one is leaving for college next week, and I have my husband to help with the younger one.

Mom's hallucinations are very mild, and I think she really is "there", but she doesn't talk very much, and when she does, it often doesn't make sense. Today she said, "I could make an appeal if I stop my music lessons and stop my CD's and stop..." then she couldn't continue. She doesn't take music lessons. Dad thinks she was trying to bargain with me to come home, but it didn't make sense. Then she said something about "seed my thoughts."

We were very close before Lewy took her away. I miss her so much. Today, though, she warmed my heart because I woke her from a nap when I got there. I asked her if she was too tired for me to be there, and she said, "I'm tired, but not too tired for you." That's the most sense she's made in a long time, and it was a spontaneous, loving response toward me personally--something I haven't experienced for a couple of years now. Usually she just looks at me blankly and hardly says a word.

My friend gave me the best advice: Take it day by day, and each day, do the best thing. Looking at it that way helps me to focus on what is important and not get as overwhelmed with the big picture.

Wed Sep 07, 2011 10:25 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My dad
Those moments mean so much, don't they? When I was physically exhausted and emotionally drained last summer my dad thanked me for something I'd done on behalf of the family and added "I'm sorry you have to take care of all this stuff now, and you have to take care of me too." He was always a very kind and generous man and his disease(s) had caused him to behave in a very self-centered way for a couple of years. It almost made me burst into tears in front of him. I told him it was fine and not to worry about me. Then I went out into the hall and burst into tears! One of his wonderful CGs came along and gave me a giant hug, which I badly needed at that point! 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.

Wed Sep 07, 2011 10:50 pm
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