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 Rollercoaster 
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Joined: Sun Aug 25, 2013 9:17 pm
Posts: 2
Post Rollercoaster
Hello from Puerto Rico. My dad was diagnosed with LBD about 6 years ago, although I had been observing symptoms much earlier. His symptoms progressed very quickly in the last 3-4 monts, and now he is completely bedridden and fluctuating between sleeping for two or three days in a row and then waking and being very agitated and anxious for another day or two. He is very disoriented, has hallucinations, continually asks us to take him home (he is home), and calls his mother. There have been a couple of periods during those sleeping spells when we think he will die, because even his breathing deteriorates. Then he springs back. It is very confusing. Is this the last stage of this terrible disease? Any natural remedies to help him with agitation and anxiety?


Thu Aug 29, 2013 10:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Rollercoaster
Welcome to the forum! I can't really answer your questions except to say that the 'up and down' nature of this disease is common and quite frustrating, as estimating their care needs and even diet can vary from week to week or day to day. My husband was barely able to swallow yesterday and the day before but ate like a horse today. :P

_________________
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 Aug 29, 2013 11:20 pm
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Joined: Sun Aug 25, 2013 9:17 pm
Posts: 2
Post Re: Rollercoaster
mockturtle wrote:
Welcome to the forum! I can't really answer your questions except to say that the 'up and down' nature of this disease is common and quite frustrating, as estimating their care needs and even diet can vary from week to week or day to day. My husband was barely able to swallow yesterday and the day before but ate like a horse today. :P


WOW! Exactly the same thing happens with my father. This is a very cruel disease indeed.


Fri Aug 30, 2013 8:06 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: Rollercoaster
Pat summed it up pretty well! It is hard to tell which stage people are in but here are a few things that might help you determine which stage:

- how many hours is your LO sleeping? If they are only awake for a few hours a few times a day, it might mean they are near the end.
- is your LO barely eating and losing a lot of weight?
- have they been losing weight over a period of months without trying to? "Failure to thrive" can be determined by a health care professional looking over their weight loss charts, eating habits over time, etc.

And, has your LO had a hospice evaluation? That is probably the best way of knowing, is to have people who do this for a living evaluate your LO. In the mainland US, hospice services are usually not available until the nurse doing the eval. determines that the person has about 6 mo. or fewer to live.

The roller coaster for us lasted right up to my dad's last hour. After not having eaten more than a bite or 2 of food a day, he ate 2 full meals the day he died. His thoughts had been very jumbled, his speech was so unclear you could barely understand him, and he had a horrific time recalling even simple words to say. His last hour, the nurse said his thoughts were clear, his speech was clear and he was even joking minutes before he died. He had not joked in about 2 year prior to his death. So, don't expect that the roller coaster will level off at any time during this disease. It probably won't. Enjoy the good moments when they come - they will become fewer and further between, but they do tend to come and go, so ride the wave when your LO is having some good moments. Big hugs, it's a really hard road to travel, 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.


Mon Sep 02, 2013 12:34 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: Rollercoaster
Welcome to the Forum. It is a very strange disease indeed. My mom spent days in bed at times and then at other times she'd walk 5 miles to the mall with her walker. You never knew from day to day what to expect. And we didn't get much warning for the end either. We were at Costco having coffee one week and two weeks later Mom was in hospice. Hang in there - it is a very difficult journey.

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Sep 03, 2013 7:14 pm
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