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 Another new member 
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Joined: Sat Mar 15, 2014 10:52 am
Posts: 2
Post Another new member
My mother was diagnosed with "probable" Lewy Body Dementia about 5 years ago. She was having visual hallucinations, confusion, etc. Since that time, she has had a mild downward progression with the addition of auditory hallucinations until a couple of weeks ago. Suddenly, she has had a drastic change. She started sleeping most of the day, was much more confused, more unsteady and in general was much "fuzzier." This went on for about 2 weeks, and now each day is a total surprise. I never know if she is going to wake up alert and functioning or in a total daze. There hasn't been any change in medication - - or anything else for that matter.

One question that I have is her current medication. She has been on Excelon patches for several years. Her NP and MD really didn't want to begin this because they said they haven't found much improvement from them. We insisted that we at least give it a try. It worked well for mother. Even she recognized the difference and said that her head felt "much clearer and not as foggy" after being on the patches for about 3 months. Now since this change a couple of weeks ago, she is complaining that her mind is just "foggy" again. My question is - - - have the patches reached their limit? Do we quit them? If we quit, is she going to get worse, or no change since they don't appear to be working now, anyway????? So many questions.

Snapper


Sat Mar 15, 2014 7:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another new member
Welcome, Snapper. My husband was on the Exelon patch for eight years. There was notable improvement initially and that was on the lower [4.6mg] dose. After that, it was impossible to tell if it prevented steeper decline but we were advised not to discontinue it.

_________________
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.


Sat Mar 15, 2014 8:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Another new member
Welcome Snapper. I agree with Pat's previous response to you. There is often no way to tell if the person would be worse off or not without a particular med. And this disease can have huge, overnight declines which bring all sorts of surprises. Hang in there, 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.


Thu Mar 20, 2014 4:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Another new member
Welcome Snapper. I agree with Pat's previous response to you. There is often no way to tell if the person would be worse off or not without a particular med. And this disease can have huge, overnight declines which bring all sorts of surprises. Hang in there, 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.


Thu Mar 20, 2014 4:09 pm
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Joined: Sat Mar 15, 2014 10:52 am
Posts: 2
Post Re: Another new member
Thank you Pat and Lynn for your replies. We have had quite an eventful week. I guess good things come from tragedy. On Friday, mother had a particularity bad bad and fell on three separate occasions. First two times, she didn't get hurt, but broke her arm just below the shoulder on the third fall. She was in such a position that we couldn't pick her up and had to call 911. They arrived, got up on a backboard and transported her to the hospital. I know it must sound like we were being careless in allowing her to fall that many times, but once, I was walking with her when she fell. It just happens so quickly! Anyway - once we got to the hospital, the orthopedic doctor recognizes right away what was happening. He finally looked at me and asked, "are you really comfortable taking her home right now, or do you think it is time that you have more help with her." For the first time, I cried. They admitted her to the hospital for evaluation. They have her geriatrics, neurology, Ortho, social services, physical therapy and occupational therapy working with her over the weekend. Being in a strange place, she was TOTALLY out of her head this weekend, but seems to be better now. Their recommendation is that after surgery on her arm tomorrow, that she be moved to a swing bed unit on Monday, then to a long term care facility after that. I am broken hearted because I wanted to care for her at home, but finally realize that I just cannot do so without 24 hour assistance. I know that she will be better in a facility used to dementia patients. They found a facility located only about 8 miles from my house that is a long term care facility with one wing designated as a swing bed unit, so she can transition from one to the other in the same facility. We are going to check it out today.
Snapper


Thu Mar 27, 2014 7:39 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another new member
Believe me, I know how quickly they can fall!

_________________
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.


Thu Mar 27, 2014 10:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Another new member
Many of us have had the same experience with our LOs falling, even with us right there, so don't beat yourself up over it. It happens in a split second even when you are doing your best to help the person stay upright. BTDT. I think you're right - a lot of good has come out of your poor mom's fall. Eventually our LOs need way too much care for one person to handle so choices have to be made, difficult as it is. Take care of yourself, and I hope all goes well with the surgery. She may be at least temporarily worse mentally after the surgery, between the meds and the trauma of going through surgery, being in the hospital, etc. so don't be surprised. And, she could regain some ground mentally after a few days or weeks. Best, 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.


Thu Mar 27, 2014 9:34 pm
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