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 Stages of LBD 
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Joined: Sun Jun 08, 2014 11:24 am
Posts: 23
Location: Locust Grove, Ga
Post Stages of LBD
My name is Debbie. I am 64 and am the caregiver for my 71 year old husband, Tom, my 41 year old developmentally disabled son and my 15 year old adopted son, who has at least as many issues as my husband. We have been married for 34 years and he was diagnosed with LBD about a year ago. As we have reflected on things we think most of his symptoms began about 5 years ago. He does not have hallucinations but does have many of the other symptoms. I'm wanting to know the stages of this horrible disease. Is there somewhere on this site that tells the common stages? We sure never planned on our older years being like this. And when we adopted our kids 13 years ago we never planned on me having to do this alone. I am so overwhelmed and alone. I was always able to talk over everything with my soul mate and yet here I sit unable to talk to anyone who understands. Sorry, I didn't mean to whine. My purpose today is really to try to understand the stages and progression of this disease. Anyone have any info? :shock:

64 year old wife of Tom, 72, who was diagnosed LBD a year ago.

Sat Jun 14, 2014 9:36 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: Stages of LBD
Welcome, Debbie. You certainly do have more to do than 1 person should ever have to do. I hope you are receiving help from other sources because caring for 3 people is just simply too much for 1 person to do alone, and you don't want to get sick for your sake or your LOs sake.

If you post in the Introductions section you are apt to get more responses, and when you have specific questions, look for topic areas most appropriate so people who only look at those areas might be able to generate more responses. (This Welcome section is where the administrators post administrative things.)

There used to be a list of stages on here which was not anything official, but was put together by a group of caregivers. They wanted it taken off, and so it was. I used to have a copy of it but it has evaporated into cyberspace, unfortunately. There are a few people on the forum who may still have a copy and might share it. I wish there were an official list of symptoms and stages. It would be most helpful to caregivers, that's for sure, especially for those of us who tend to be planners.

One statistic I do remember (not sure if it was even in the stages list) was that people tend to live 2 - 7 years after diagnosis. That was a helpful thing for me to know in planning where to place my dad when he had to move to an ALF, to know if I needed to sell his house right away to help pay for the ALF, etc. The financial planning piece is HUGE!!! At about $5,000 - $10,000 a month for ALFs and SNFs, we caregivers need to have some idea of the person's longevity and what we can afford for care.

I hope someone will find the stages list and send it to you. It cannot be posted on here at the request of the people who wrote it. Best, 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.

Sat Jun 14, 2014 12:02 pm

Joined: Wed Nov 13, 2013 3:04 pm
Posts: 41
Post Re: Stages of LBD
I would be interested in seeing that as well.

My mom, who is currently hospitalized, they say is in stage 6d. Seven is the last stage and was told it is the longest. The behaviors in 7 get easier to manage, but there are swallowing issues as well as skilled care.

Mon Jul 14, 2014 11:33 am

Joined: Mon Jul 14, 2014 10:00 pm
Posts: 3
Post Re: Stages of LBD
Hi Debbie! I'm Debra, 59, and my husband, Tom, who is 73, was diagnosed with LBD July 1, 2014, however , LBD has been slowly creeping into our life for about 3 years I would guess. We also have a 15 year old girl. My husband and I own a small business and have worked together for the past 10 years. I, as you, would love to see the stages of LBD too. I am so overwhelmed by the enormity of it all! I am trying to read as much as I can find about LBD, and as for now, taking one day at a time!! Sometimes, one minute at a time! Im sorry you and others are having to go through this but it's good to know I'm not alone!

Tue Jul 15, 2014 12:05 pm

Joined: Thu May 15, 2014 10:41 pm
Posts: 64
Location: Phoenix, AZ
Post Re: Stages of LBD
Debra - welcome to the forum! Feel free, when you're ready, to introduce yourself and share a bit about your situation in the "Introductions" section. And try not to be too overwhelmed as you read through the various threads. LBD is definitely a "take it one day at a time" kind of illness. So glad you found us!

Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.

Tue Jul 15, 2014 7:42 pm

Joined: Tue Aug 19, 2014 11:50 am
Posts: 2
Post Re: Stages of LBD
I am also confused about stages of LBD. The only detailed descriptions of stages (7a, 7b, etc.) seem to refer to Alzheimer's rather than LBD. They seem to assume people lose the ability to speak before they lose the ability to walk, for example.

My father is completely incontinent, completely non-ambulatory, and completely unable to manage any ADLs. He cannot even sit forward in his wheelchair and needs to be moved in and out of bed with a Hoyer lift. He has also lost the ability to swallow anything except liquids: he "pouches" chewed food rather than swallowing it. However, he does not have "fewer than six words"; in fact, on his better days he speaks in full sentences with a rich vocabulary. (For example, today he complained that "it takes a whole henhouse of attendants" to help him in and out of bed at the nursing home.) So, which "stage" is he in?

Tue Aug 19, 2014 2:40 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3327
Location: Vermont
Post Re: Stages of LBD
Very good question, Vanny, and not one that will have a simple or necessarily correct answer. This is the reason that many people think it's sort of futile to even have a list of stages for LBD sufferers, as their symptoms can come and go at a moment's notice.

I think this might be useful for you to make note of:

Does your LO have more bad days/hours than good ones or are they about equal?
How much sleep does he require?
Has he lost weight? Is he continuing to lose weight?

Those things will help determine "stages" more than specifics numbers of words, etc.

My dad had a terrible time talking his last 6 months or so, but on the day he died he could speak in full sentences and even was making jokes, which he hadn't been able to do in about 2 years. He had barely eaten more than a few spoonsful of food in his last few months, yet he ate 2 full meals the day he died. So, those abilities that show up once in a while are not indicative of stages, it's more like their overall health, eating habits and sleep habits will give you a better picture of possible longevity.

LBD is extremely unpredictable. That seems to be the only "given" with this disease. And, BTW, welcome to the forum, come back as often as you want. 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.

Tue Aug 19, 2014 4:46 pm

Joined: Wed Nov 13, 2013 3:30 pm
Posts: 57
Post Re: Stages of LBD
This seems to be the most common question I get from folks asking about my husband.

With a -sigh- I have to say: "There is no pattern. What I see right now in him, I may not see tomorrow or even the next hour. It is what it is at this moment."

He'll go thru bouts of things, like weight loss, and then bounce back and gain again.
He'll have three or four days of decreased cognitive ability & confusion and then come back to me.
He'll have nights of sleep walking & getting lost in the house and the next morning be ok again.

It truly follows no linear pattern like Alzheimer's or another disease.

Wed Aug 20, 2014 7:52 am
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