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 Questions? Advice? 
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Questions? Advice?
I don't know if I should be concerned or not. Trying not to. My husband, Ron, is 68, dementia for 8 years (?) and potential LBD for just 2 or 3 months. He seems to be changing fast. At times, just fine (for him) and others, WOW. Today has not been a good day. He has been very argumentative and staring into space more than usual. I also noticed that he has lost quite a bit of weight. I knew his appetite has decreased. I bet he has easily lost 20 lbs in the last 4 weeks. He is sleeping much more than usual for him. Ron usually sleeps till about 10am, gets up, eats, naps off and on till supper and bed by 8 or 8:30pm. In the last 2 or 3 weeks, he has been been awake for about 4 or 5 hours a day. I have a feeling that if I let him, he would sleep all day and night. About a month ago, Ron was in the hospital for about 10 days. He had a nasty UTI and suspected menengitus. Tried to do a spinal tap, but could not complete it due to arthritis in his spine. He slept 22 hours a day most of the time he was there. Has not been the same since. I am just getting worried and would love to hear it is all over nothing.

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Katie, married to the love of my life on June 14, 1969.


Tue Sep 27, 2011 10:53 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Questions? Advice?
A hospital stay can be very traumatic. Our experience is that it takes a few months to recover from that, in addition to recovering from the cause of the hospitalization.

Has the weight loss been since the hospital stay? Is it weight he can afford to lose?

I hope you are in touch with his doctor about the current concerns.

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


Tue Sep 27, 2011 11:37 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Questions? Advice?
ill be watching, with interest for your answers..... as i feel like i'm seeing the same thing here.. weight loss ( nothing tastes good for him anymore) asleep by 7pm till 9 am in the morning, with a nap in the afternoon.. only 66 yrs old.... noticed problems 10 years ago, lewy possibility, 6 months ago.. good days ok, bad days just sitting and staring.. no recent trips to the hospital.. but blood pressure all over the charts... was 99/50 yesterday... 140/76 midafternoon.. most days 112/57 .....

maybe we can find out together, if that is ok??
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Sep 27, 2011 11:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Questions? Advice?
Katie,
Is there a problem with letting him sleep as much as he wants to?
Robin


Wed Sep 28, 2011 12:31 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Questions? Advice?
Frank did the same, didn't want to eat, slept 18-22 hrs a day and lost 30 lbs in 3 months. He's back to eating and only dozes "sometimes" during the day, sleeps 12-14 hours at night. He can no longer walk or stand, very difficult for transfers, I never wake him and I'm more at peace when he sleeps. Hang on, it is a wild rollercoaster ride.
Take Care,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Sep 28, 2011 5:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Questions? Advice?
I'd suggest talking with your LOs PCP and see what s/he thinks. Perhaps he is ready for hospice services? From what I remember, the hospice booklet has a timeline and symptoms in people's final 6 - 12 mo. (I think that's the range). Increased sleeping, decreased food and drink intake and significant weight loss could be signs for the beginning of the final stages. It may be comforting to know what you are dealing with from medical pros who deal with this every day. All the best, 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.


Wed Sep 28, 2011 1:52 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Questions? Advice?
Thank you all for your responses. It is so great to be able to talk to people who actually know what you are going through. Thank you.
Lynn - I don't think we are at the end because he is still quite mentally alert. He knows everyone, not always the names, can still do so many things for himself. Memory is definately on the way out, but not as described for the end of life. And yes, I am in touch with his doctors. Thank you so very much.
Gerry - I see "wild roller coaster ride" a lot on here. What an apt expression. Thanks.
Robin - I have been thinking all day about what you said. The only problem I see with him sleeping all day is that I feel guilty about it. He has to have meds and food in the morning, but we figured out how to do that today. He slept till about 5pm. Got up for bathroom breaks, but that was all. We ate supper and he slept in the chair till he went to bed at 8pm. No idea how this will work out in the end.
Cindi - looks like we will have this wild roller coaster ride together. It will be nice to share it.
Jeanne - This is definately weight that Ron can afford to loose and yes, it is since the hospital visit. The doctor will probably be glad. I had no idea that it could take so long to recover from a hospital visit. It was a traumatic experience for him, as it was for us all. I will post what the doctor says when he contacts me. May be a day or two.
Thanks everyone. It is hard to talk about this. If I talk about it, I have to accept that it is real. This is not what I had planned at 62 years of age.

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Katie, married to the love of my life on June 14, 1969.


Wed Sep 28, 2011 8:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: Questions? Advice?
I know, Kate. It must seem so unfair and hard to accept when you are both so young. I'd be interested to hear what your dr. says about his sleeping so much and whether the dr. thinks it may be a sign of later stages. I think that if a person with an illness is sleeping a lot, it's because their body needs it for whatever reason. I'd just let him sleep and give yourself a break to take care of yourself as well as all your household duties. And don't feel guilty about it!!!!! You have a difficult job and need time for yourself. 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.


Wed Sep 28, 2011 8:53 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Questions? Advice?
Lynn, thank you.

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Katie, married to the love of my life on June 14, 1969.


Wed Sep 28, 2011 9:57 pm
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Joined: Fri Jul 29, 2011 1:22 am
Posts: 42
Location: Delaware
Post Re: Questions? Advice?
Well, Ron's recent total sleeping period is over. He still sleeps excessively, but not like he was a week ago. I don't think this is a precursor of the end for Ron. He is still very mobile and (when awake), still talks, eats, and takes care of himself. So right now, I would say that we are on the up swing of the roller coaster. I will enjoy it while it is here. Have a great evening!

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Katie, married to the love of my life on June 14, 1969.


Tue Oct 04, 2011 9:44 pm
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