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 Complete Change 
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Joined: Thu Aug 15, 2013 5:22 pm
Posts: 4
Location: Illinois
Post Complete Change
My mother was diagnosed with Lewy Body Dementia about 3 years ago. From then until about a month ago, she has progressed through the various stages of the disease. She has been near death twice. One month ago, she started looking around her surroundings and actually seeing them. She is speaking clearly and logically after not having spoken all year except for a word here or there at most. She has begun to feed herself again after needing to be spoon-fed by myself, hospice or nursing home staff. She is smiling and laughing at things that are actually funny.

Is this a normal part of the process? I am glad that she is doing better but feel like I am waiting for "the other shoe to drop" even more than when she was totally out of it. Hospice has not provided any concrete or reassuring answers to the changes. They seem as confused by it as I am.

Thank you for any insight into this stage.


Thu Aug 15, 2013 8:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Complete Change
I will share with you our family's experience 3 years ago. My dad was near end of life and had recently gone on hospice services. He had a similar resurgence of clarity of mind, clarity of speech, ability to joke, and eating 2 normal-sized meals one morning. He had barely eaten in 4 or 5 months, was totally bedridden and very, very ill. The resurgence caused the hospice nurse to tell me about noon that he "may be around longer than a few weeks, maybe a couple more months". He died less than an hour later. So, I can't tell you that your LOs rallying may last or not, but I can tell you that this is a very, very strange disease that seems to make little sense. Let's hope your LO has a plateau of better health for a while. Take care, Lynn

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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 Aug 15, 2013 9:08 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Complete Change
My mother also experienced a dramatic improvement a few months ago. She had been in hospice care, had deteriorated and was barely eating, and seemed very weak and disoriented. I called my sister and suggested she fly out (she is in DC, and we are in CA). My mother perked up seeing my sister and niece for Mother's Day, went back to eating and feeding herself, gained weight, and was much more oriented and grounded. I thought it might be burning reserves to enjoy that time with her other daughter, but no - it lasted for months; hospice got discontinued.

She has slipped back again cognitively, is a little weaker again, but is still eating ok and can be articulate and coherent when she has the energy to do so.

So I have no idea what the prognosis might be, and nor does hospice. I am just grateful for the time together, and that she knows we (my dad, my husband, my daughter and her kids, me) still love her and show up and help.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Aug 16, 2013 12:12 am
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Joined: Thu Aug 15, 2013 5:22 pm
Posts: 4
Location: Illinois
Post Re: Complete Change
Thank you Laurel and Lynn for sharing your experiences with LBD. I feel better knowing that this type of change has happened to others. And that family members have been just as confused as I am right now. Thank you again!


Fri Aug 16, 2013 9:24 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Complete Change
Teresa - the most outstanding characteristic about LBD is that it is SO unpredictable and meds to help the symptoms can have very different affects on its various victims. Just when you think you have a handle on what's happening, some new thing pops up. After a while you just get used to the sudden changes and unpredictability of this strange disease. It makes it particularly hard on the CG, I think because you never know what's around the next curve in the road. And there are LOTS of curves in the road. Try to take time to take care of yourself, as this can also be a very long road for some. Big hug, Lynn

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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 Aug 16, 2013 10:09 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Complete Change
This is why Lewy is called the 'roller coaster'. Not a fun roller coaster, though.... :cry:

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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.


Fri Aug 16, 2013 12:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Complete Change
Well Pat, some of us have never liked roller coasters anyway! I always found them terrifying, myself! LOL

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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 Aug 16, 2013 12:10 pm
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Joined: Thu Aug 15, 2013 5:22 pm
Posts: 4
Location: Illinois
Post Re: Complete Change
I had not heard that LBD was called the "roller coaster" but I certainly see why it is! And I agree that roller coasters are scary! And this one more so than most!


Fri Aug 16, 2013 2:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Complete Change
I happen to love roller coasters [my daughter and I once rode one 12 times in a row!] but not the Lewy one.

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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.


Fri Aug 16, 2013 3:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Complete Change
Pat, you are an adventurous and strong woman! My sister (older of course) used to force me to ride roller coasters when I was little. I've hated them ever since! I suppose you have or will do that crazy ride on top of the sky scraper in Las Vegas??? LOL

_________________
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 Aug 16, 2013 3:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Complete Change
No--I don't waste $$ like that any more. ;-) Sorry for the thread hijack!

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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.


Fri Aug 16, 2013 4:34 pm
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Joined: Sun Jan 06, 2013 7:37 pm
Posts: 7
Post Re: Complete Change
Hi Teresa.

I just want to tell you you're not alone in what you're experiencing with your mom. Last November my mother could barely feed herself anymore or lift her head from the table. Hospice was recommended but not started. That January she had a severe bowel obstruction which was one of the most violent things I've ever seen. She was vomiting and aspirating sludge and developed mild pneumonia. She couldn't speak for 2 days, and on day 3 in the hospital she just came to, and started talking like I hadn't heard her in 5 years. It was like meeting a ghost. I had her call everyone we knew before she disappeared again. She was discharged and started emailing me from home, long detailed messages. I even forwarded them to her neurologist just to show him how dramatic these fluctuations can be. She hadn't been able to type a sentence for over 6 months.

She did gradually return to her baseline over the next 6 weeks. Usually the fluctuations are sudden. In Feb. she suddenly could not sit up anymore, and started sleeping 20 hrs at a time, completely unable to rouse. THAT time we finally called in hospice and got things started. Six months later, she's being discharged from hospice this week. She can't walk anymore, and is in long term care, and cognitively she's slow and speech is slurred, but she's talkative and coherent.

I know completely what you mean about the other shoe dropping, and it is such a hard feeling to shake. But now, with hospice being discontinued, all I can do is take one day at a time for real, and not just say it or tell others to :P . It's taken a couple years, but I think I'm finally training myself to make sure her care is appropriate for her NOW and I'll deal with the next event as it happens. We have to stop trying to predict, when even doctors and hospice gets it wrong.

Hang it there, I hope you're both getting the support you need.
Annie


Thu Aug 22, 2013 6:52 pm
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Joined: Thu Aug 15, 2013 5:22 pm
Posts: 4
Location: Illinois
Post Re: Complete Change
Annie,
Thank you for your reassuring words. It sure is amazing what our brains and bodies are capable of doing! Although my mom did not "rebound" quite as well as yours, "seeing a ghost" is a great description!

Since my original post, Mom has deteriorated. She tries to speak but it comes out mumbled and ever so quiet that it cannot be understood most of the time. She has stopped feeding herself and the past two days, she has been asleep at lunch but would eat what I put in her mouth. I did not know one could eat and sleep at the same time!

It is hard to stop myself from trying to predict what is going to happen with her. When God is ready for her, He'll get her. I guess trying to get everything in place beforehand is my coping mechanism. I certainly wish she could stay forever but not like she is now. I just want what is best for her.

Again thank you for your words of reassurance. I felt like my hospice professionals just left me out there wondering. Perhaps they had not experienced anything like this before either.

Good luck to you and your mom.
Teresa


Thu Aug 22, 2013 7:40 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Complete Change
Change is the only thing consistant with LBD, it is never ending !

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Irene Selak


Fri Aug 23, 2013 4:47 pm
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