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 Cross topic--stages, life expectancy and invasive procedures 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cross topic--stages, life expectancy and invasive proced
Derek had no discomfort whatsoever with his. During the last one, I was in the room with him watching the video of the inside of his colon! :P He was comfortable and pretty sedated.

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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.


Tue Jan 11, 2011 6:51 pm
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Joined: Mon Nov 22, 2010 1:24 pm
Posts: 57
Post Re: Cross topic--stages, life expectancy and invasive proced
As I was going through this alone with my mother, this was my most prevalent question. How far is she in the disease? Does she have it?, I am sure was second.

Mom started really showing issues in about 2003 or was she? Ha...Her primary care doc wasn't much help but looking back I am sure she was on her best behavior(she saw him regularly)with him. We moved her primary care doc to another city close to me, found a neuorologist for her and finally got her diagnosed in late 2006. I was told either LBD or AD and that I could look it up on the internet. I did and found some infor but not much.

Oh... how many times I wondered how long we had and how bad would it get? I am one who likes to differentiate one thing from another. It was quite an emotional process for me.

So I want to say this: No one knows for sure. You are probably the best judge if you know the LO well. There cannot be a particular time line for this disease because there are toooo many variables involved. I am sure the paper on staging you are wanting to post is proabably well thought out and from the heart. Maybe.... dont know of the paper but I myself would be interested still. We should all get together and report what we see! Sorry Gail, I know how much you want a definitive answer!

As far as procedures- well I haved the book of all books/stories so I think I wont go into everything here. lol! If the procedure was not going to add quality of like I didnt put her through it. She had already been through so much in her life time!

Sharon E.


Tue Jan 11, 2011 6:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cross topic--stages, life expectancy and invasive proced
And the time in each 'stage' varies so much. If my husband was ever in Stage 1, we probably didn't realize it. I would say that Stage 2 lasted from 2002 until 2005, then Stage 3 until maybe mid-2009, Stage 4 until about September of 2010, when he started sliding into Stage 5. From what I've heard, Stage 5 [and I've always prayed he would be spared this stage!] doesn't usually last as long as other stages but, again, it varies. And, of course, with Lewy, they can regress to former levels for a while but the overall progression is measurable and certain. When I think of what he was able to do just a year ago, I want to :cry:.

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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.


Tue Jan 11, 2011 7:09 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Gail, whether a dementia patient should have a colonoscopy is a decision each caregiver must make. It sounds like you have decided it would be valuable. That is a perfectly reasonable and valid decision. It is not the same decision that every caregiver would make, but that doesn't matter. We each have to come at this with love, and make the best decisions we can in our particular circumstances.

The real question, it seems to me, is given that decision, how can you make the prep work for your husband, or is that even possible? From the answers I've seen posted here so far (and maybe there will be more) sometimes the LO is cooperative and sometimes not. Sometimes the difficulty in using a toilet makes it impractical. And even though the procedure itself is no big deal (to us) some LOs found it terrifying. Which of the situations described seems most like what you can expect from your husband? And that is very hard to predict, I suspect, unless he is at a very stable point in his progression and is pretty consistent in his behaviors.

There are no "wrong" decisions here. Do the best you can with what you know, and move forward.

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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 Jan 11, 2011 7:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cross topic--stages, life expectancy and invasive proced
You are right, Jeanne. There are no wrong decision in these matters.

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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.


Tue Jan 11, 2011 7:29 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Cross topic--stages, life expectancy and invasive proced
Dale screamed? Did they forget to sedate him? You're supposed to be out of it. I have had several, about 3-4 years apart. I was actually awake during one because I was dehydrated and they went easy on the sedation. So I watched it on the monitor. At one point with a little discomfort, I said "ooh, ooh," and the doctor said "I'm just going around a corner here."

The stages I mentioned were ones Robin referenced.


Wed Jan 12, 2011 12:23 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Gail, I don't know which one Robin referred to. I read one on what seemed to be a credible website that listed 7 stages. I didn't notice some of the major symptoms many of our LOs experience listed anywhere on the list-- falling down, sudden blood pressure drops, loss of the sense of smell, or severe sleeping difficulties, for example. They list hallucinations near the very end, but hallucinations very early-on is one of the symptoms that distinguishes LBD from other dementias.

I laughed when I read that inappropriate dressing is stage 5. In the caregiver interview for one of Coy's early appointments I answered questions quickly, one after the other, until she asked "does he dress appropriately?" There was a long pause and finally I said, "He's an engineer!" She laughed and said, "Let me rephrase that. Does he dress about as appropriately as he always has?" Ah, that I could answer! :P

Maybe the real reason I don't have much faith in that list is that according to it, I'm in stage 3 and some days 4! :roll:

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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


Wed Jan 12, 2011 1:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Cross topic--stages, life expectancy and invasive proced
The staging chart for LBD that I use has only five stages. That's the problem. The Alzheimer's stages are quite different and there are more of them. It would be nice if we were all using the same staging system.

_________________
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 Jan 12, 2011 1:32 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Cross topic--stages, life expectancy and invasive proced
Ah, Pat. I just came across a 5-stage list put together by a caregiver group. I don't know if it is the one you use, but I like it a lot better than the 7-stage list I found first. For one thing, I don't see myself in any of the stages! :lol: And the symptoms they do list are ones I've seen firsthand or heard other caregivers talk about. From that list I'd say Coy is in stage 2, and has been for 6+ years. (His first year was much more severe.)

The thing is, since there is no list sanctioned by a scientific body or established by carefully documented research, any one can publish their own list on the internet. It will show up on a Google search and get passed around and wind up quoted on other sites, etc. Having lots of lists floating around with various levels of thought and experience behind them is very confusing!

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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


Wed Jan 12, 2011 2:04 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Cross topic--stages, life expectancy and invasive proced
Yes, Dale screamed. I should have mentioned that a portion of his plumbing was removed when he was five years old due to a blockage.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Jan 12, 2011 8:05 am
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