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 Stages and Life Expectancy? 
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Stages and Life Expectancy?
I'm new here and although I've read a lot about LBD I'm very interested in whether anyone here has recognized any possible stages that their loved ones have gone through if they've been diagnosed for a long period and what the life expectancy has been for their loved ones.

My Dad was diagnosed with Alzheimer's in January 2010, almost 4 years ago, but it continues to become very certain that he has LBD. His symptoms just have never matched up with those of AD. I read the Whitworth's book - A Caregiver's Guide to Lewy Body Dementia - after doing a lot of other research. This book describes my Dad to a tee and I will be asking his neurologist whether a diagnosis of LBD would be more appropriate at his next visit.

But I'm concerned about how to tell how far along he might be in his journey with this disease. Are there certain symptoms that pick up the further the disease progresses? And how long is the life expectancy of someone with LBD? I've read that many of the symptoms usually begin before a person is actually diagnosed (I know they did with my Dad, looking back). Are these "pre" symptoms taken into account when talking about life expectancy?

Thanks for reading my ramblings. If anyone can shed any light on my questions I'd appreciate it! Thanks again.


Fri Sep 13, 2013 5:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Stages and Life Expectancy?
This is a question that so many of us family members/CGs want to know, and unfortunately there doesn't seem to be anything conclusive. Somewhere on here there used to be an outline of symptoms and progression of the disease which was an informal document written by a group of CGs. There was a big to-do about it being posted and it was taken off but I think I may still have a copy of it somewhere. If you send me a PM with your email address, I'll try to find it and email it to you.

It is not an officially-sanctioned document but it can give you some general idea of where your LO (possibly). And I say possibly because this disease can be very unpredictable - it is characterized by major ups and downs. A few lucky people who were diagnosed and treated early were able to find some relief with meds and were able to stave off the worst of the disease (for a while).

A couple of things that seem to be reflective of what stage the person is in are: how much time do they sleep in a typical day? how are their eating habits? how much weight loss have they experienced and in what timeframe?

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.


Wed Oct 02, 2013 7:49 am
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Stages and Life Expectancy?
Hi Lynn,

Thanks so much for offering to send me the information on possible stages of LBD. I'd love to have this info. I haven't been able to determine how to send you a private message. I notice that when I post, an e-mail box is located at the bottom of my post, but there isn't one on your post and I don't find one under your profile.


Fri Oct 04, 2013 8:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Stages and Life Expectancy?
I think if you just send me a PM with your email address, I'll email it to you. Because of the type of email address I have, I don't think it works on here.

_________________
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 Oct 04, 2013 9:04 pm
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Joined: Sun Oct 06, 2013 11:16 pm
Posts: 4
Post Re: Stages and Life Expectancy?
I too would like to has a copy of the life expectancy and stages if you would be able to send it to me. My dad is 82 and was diagnosed a year ago. He seems to be declining rapidly. It would help to have a rough guideline.

Thanks

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MariaP
loving dad with lewey body dementia and mom with vascular dementia


Mon Oct 07, 2013 1:41 am
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Stages and Life Expectancy?
Sorry I haven't been on here in a while. Gary as you know was pretty much out of it at the end of last year but he bounced back and started walking and eating again. Then 2 weeks ago he started to spiral down again. He has been bedridden, completely incontinent and has to be spoon fed food that has to be ground up in a blender. Today he barely ate anything. I don't know if this is it or not. He barely opens his eyes and he doesn't communicate at all. The caregiver I have with him during the day is a retired nurse but I don't know if I should contact someone for hospice or if he'll bounce back again. This roller coaster is not easy. I take care of him alone when not at work (need the insurance for him) and it is very difficult to change him and the bed twice daily because he can't help me at all even though I somehow get the strength to do it. I hope he doesn't realize what's happening to him. All I can do is love him and take care of him with the best of my ability.

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Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Wed Oct 09, 2013 11:20 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Stages and Life Expectancy?
Liz, my husband is exactly where your husband is. He has lost 24 pounds since January and seems to be failing but, with Lewy, you never know. One reason I never put him on Hospice is because of the roller coaster phenomenon. It's so very sad to see them deteriorate like this--just heartbreaking. And trying to get him to eat is so frustrating! God bless all of you who are dealing with this cruel disease!

_________________
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.


Wed Oct 09, 2013 12:20 pm
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Joined: Thu Jan 17, 2013 9:31 pm
Posts: 38
Post Re: Stages and Life Expectancy?
Thanks for the response Pat. I think anyone who has to deal with this with their loved ones are growing angel wings. Sometimes with just a smile from our loved ones it's worth it.

_________________
Liz (59) married to Gary (64) 39 years. Gary was diagnosed with LBD with Parkinsonian features after many years of frustration in December 2011. Gary passed away on October 23, 2013.


Wed Oct 09, 2013 1:24 pm
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Joined: Mon Oct 15, 2012 8:46 pm
Posts: 21
Post Re: Stages and Life Expectancy?
Hi Lynn, would you be able to send me that doc as well please? I can't find your PM here.


Tue Oct 15, 2013 6:40 pm
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Joined: Sun Oct 06, 2013 11:16 pm
Posts: 4
Post Re: Stages and Life Expectancy?
Lynn,

Please tell me how to PM you so that I can get the doc your referred to.....

Maria

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MariaP
loving dad with lewey body dementia and mom with vascular dementia


Wed Oct 16, 2013 3:49 pm
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Re: Stages and Life Expectancy?
I've read in various places that life expectancy for LBD patients is an average of 7 years following diagnosis. What these articles never say is whether this "diagnosis" means the actual initial diagnosis of dementia (Dad was diagnosed 4 years ago with AD), or the diagnosis of "probable" Lewy Body Dementia (this happened about a month ago). I'm sure its relative to how far the disease has actually progressed, but has anyone found this information anywhere?


Thu Oct 31, 2013 11:48 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Stages and Life Expectancy?
This disease presents itself so differently in people and there are a lot of differences in how it progresses so it's really hard, I think, to predict longevity. That is one of the reasons it's so hard to find out a list of stages and life expectancies. For many people it seems to progress by big declines, then some "recovery" of functions, then the next big decline, etc. Where your LO currently is could be totally different tomorrow. Some people have a more gradual decline, and it's really hard if not impossible to know how your LO's situation will progress. That is not very comforting when you are trying to wrap your head around planning for your LO's care, finances, etc. (I know, BTDT). I am a planner. I really struggled with the lack of any data to help me in my dad's care. It was one of the most frustrating things, especially when trying to plan for inhome care, moving him to an ALF or an SNF. When you are paying out of pocket for the outrageously expensive care that's available, knowing if a person is likely to live another 10 years vs. 2 years is crucial. However, I had to live with the unpredictability because there really was no way to predict the progression of LBD. Having known a number of people whose LO's have/had LBD, and by reading this forum, my observation is that 7 years or fewer is a reasonable number to work with, whether from the time of dx or onset of obvious symptoms. 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.


Fri Nov 01, 2013 8:57 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Stages and Life Expectancy?
lynn.. what you say is so true.. knowing would be so helpful.. in so many ways... financial being one of the main ones... .. but like you say ive seen in a few forums..a couple of years,, a couple of months,, and many years.. i think the age and health of the LO has a lot to do with it too... but in saying that, i just read of a gentleman that passed away so quickly at 58... and it seems to take so little to push a person froward.. a cold, a fall...etc

also for the caregiver.. its hard.. i know i can do this for this much time, but 20 times that,might be a different story.... getting more help sooner if you knew aprox how long... but then nothing about lewy is easy...
cindi

_________________
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..


Sun Nov 03, 2013 8:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Stages and Life Expectancy?
Yes, Cindi, it would be so helpful to the CGs if there were a better way of knowing how much longer our LOs are likely to have, for so many reasons. The unknown just makes it that much harder.
Take care, 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.


Sun Nov 03, 2013 8:21 pm
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Joined: Tue Oct 09, 2012 11:29 pm
Posts: 10
Location: North Bonneville, WA
Post Re: Stages and Life Expectancy?
I would really appreciate any kind of information along this line too. My husband is probably in early stages and is young and relatively healthy but we are both very frustrated by not knowing whar might be coming. His neuro hasn't officially diagnosed him, just says its something in the LB family. I am pretty certain as to it being LB-the symptoms fit exactly, especially now that he has developed Parkinson like tremors and muscle cramps, and has had a few hallucinations.
He started losing weight at the same time he started losing his memory. He has virtually no sense of smell, so I'm sure that doesn't help. At least part of every day he feels terrible, like there is a block in the front of his eyes and forehead and he has lost interest in everything-very flat and apathetic. He is also very insecure, and wants my attention all of the time, which is very hard because I have so much to do managing everything now.
When he is feeling really bad and out of it, he starts talking about dying. I don't know what the reality is. I know it's something we need to talk about-his wishes for end of life care, and funeral arrangements, etc.-but it is hard.
Lynn, I don't know how to PM you, but I would like very much to see that document that you wrote about. Tell me how to go about getting it from you if you still have it.
I realize this is a rambling note, but I have a granddaughter begging me to take her outside, I need to get my husband to eat something, and the family is here watching a football game. I'm overwhelmed, as usual. I used to be a pretty good writer, now I can scarcely form a logical thought.

_________________
Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.


Sun Jan 19, 2014 6:06 pm
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