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 Vision and LBD 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Vision and LBD
Gerry - is he receiving hospice services yet? With significant weight loss that can be a way to get into hospice if your LO isn't already getting those services. 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.


Tue Aug 16, 2011 8:31 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Vision and LBD
Lynn, He's not on Hospice, last week our Dr. said to call him if I thought it was time to have him evaluated. He has definately declined in the last few months. The weight loss, he seldom talks, and if he does it doesn't make sense and he sleeps 16-20+ hours most days. I have a list that Hospice uses and most apply to him but he just seems Toooo healthy, phyically, to contact them yet. He's not bed ridden, and incontinence also fluctuates. I'm not sure that Hospice could be of any help, yet. Thank you for the suggestion and for staying with us.
Sorry to hear about your friend. We had a friend that we worked with, we all retired at the same time, and since the retirement we met for breakfast Monday mornings. A week ago they found him dead in his back yard, they think he had been there for 2-3 days. Life and death works in strange ways.
Take Care,
Gerry

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


Tue Aug 16, 2011 8:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Vision and LBD
Oh my Gerry, that is just awful! That's really awful that no one knew he was there. I've been trying to convince my friend for several years to retire, and she didn't do it until a month ago. They bought a condo in Hawaii several years ago and were going to retire there. Her husband is still working. You just don't expect a super healthy 61 yr. old to die. So sad. Her 80+ mom was at the memorial service/party. I felt so horrible for the mom, husband and kids. Thanks for writing, 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.


Tue Aug 16, 2011 9:17 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Vision and LBD
Gerry,
It can't hurt to get a Hospice evaluation and if he is not except all the paper work will be done for when he is ready !

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Irene Selak


Wed Aug 17, 2011 5:47 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Vision and LBD
Irene, Today is one of those fluctuations, after sleeping 20-22 hrs for the two days, he didn't nap all day, was busy carrying small items from the house to the deck. I think his mobility would be a negative with Hospice.

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


Wed Aug 17, 2011 7:54 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Vision and LBD
I am running into the same problem as Gerry. The fluctuations are erratic. My MIL will be non-verbal, never leaving her room, and barely able to understand conversation around her and suddenly become just a seemingly normal, but elderly dementia patient. She'll get released from PT only to fall a couple of days later. She'll have a normal BP one day only to faint from a sudden drop the next. Her heart is great, her lungs are great, and her weight is stable (although it appears that she may be losing weight slowly). But what Irene says makes a lot of sense - at least hospice will have the paperwork on file. Might be worth a try.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Wed Aug 17, 2011 9:01 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: Vision and LBD
Gerry, I like Irene's suggestion. It is what I did and I am glad. In the whole scheme of things, I knew it presented one more option, if needed, but the thing that helped the most, I found invaluable, came about almost as an afterthought. The nice lady from Hospice was at my house, we sat in my kitchen discussing Mr Bobby, where he was and what I had in place at that time. Things seemed to be going smoothly, but downhill, and she had us on file but not signed up. . As she started to leave, I asked for the paperwork which told a lot about what to expect during the last months, weeks, days and hours. It was hard to read but I learned so much. Before that I thought I knew most everything,.. wrong. Mr Bobby's last days sounded so much like Gail reported about Charlie. Mr Bobby spent his last week in a regular hospital but with Hospice like care and I followed his decline by the papers I had from Hospice. Knowing what was happening almost gave me the feeling of someone following a script. It gave me the instincts to contact Robin in a timely manner and she worked with the liason person at the hospital. I was numb but well aware of everything that happened and observed it was exactly as it should be.

I hope this helps without causing anyone to feel upset.

Dorthea


Wed Aug 17, 2011 10:54 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Vision and LBD
It has been a while since I have posted. Just enduring. On hospice, I'm in the same position as Gerry and Donna. My LO is still mobile, but falls weekly (lets go of the walker and falls backward or misses the chair due to vision). She is slowly losing weight and appetite and sleeps about 15 hours, but she puts on lipstick and becomes an "A student" for any visitor. When she has a visitor her cheeks are pink, her eyes are bright, her cogition improves markedly and if asked if she has any pain she will say no. She is in pain (compressed spinal fractures from falls) but she either doesn't feel it all the time or she doesn't want to admit it. I asked the PCP whether she might be approved for hospice and was told "on a good day, no. On a bad day, yes.". I would love to have hospice help to manage pain meds and help me decide when the pain is bad enough for an x-ray. If there is a fracture I treat the pain differently and arrange for more help.

She was evaluated last year so the paperwork is on file. I think there will be a broken hip one of these days and then she will probably qualify. As background, she lives in a good ALF (dementia care) and family or a hired caregiver is there to prevent falls all but one 5 hour period and one 2 hour period round the clock. We only have one hospice in our area but it has a great reputation. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Aug 18, 2011 10:44 am
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