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 share your experiences 
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Joined: Tue May 01, 2007 5:07 pm
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I am curious about a couple things. Can members give me an idea of the typical life span of LBD individuals. Can you relate experiences of what the last 1-2 years of life were like. LBD tend to fluctuate going through good periods then a bad. In later stages what happens? Do these times get closer together? When do you know if you cannot leave them alone at all? My father hates to shower. I think it is because all the effort it takes. He has been better since we assist him. How do you deal with the mood swings and negativity? What to do if you feel adult daycare would be helpful, but you know your loved one will fight you tooth and nail about going?

Arianne


Thu May 03, 2007 3:32 pm
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Joined: Thu Jan 18, 2007 11:38 pm
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Hi Arianne,
Kani again. My dad was just diagnosed in October. we think this has been coming on for sometime (maybe the last 3-4 years) He was very good at compensating. I have all the same questions and none of the answers. When my Dad couldn't stay home alone became very obvious when he almost started two fires. It was when he got violent that we knew we had to make a choice about where he was to live. We had been looking (at the advice of doctors and social workers) for an assisted living arrangement for those with dementia prior to this and we were lucky to find a very good one. We had placed a bed hold and luckily when he became violent they had a place for him. It has been extremely hard for my mother and all of us. My dad though seems to like it, he sometimes ask to come home but when he was at home he often asked to go home. I also think that in some ways it is much less stressful. He is free to wander, anytime day or night, it is a gated facility. No one tells him you shouldn't do this or that, eat this or that. They do a wonderful job of redirecting him and I think he feels less pressure and less sense of failure. His decline has been rapid and I wonder how long we have. I suspect not too long. My advice to anyone going through this is be looking at alternatives before you need them - once you reach a crisis point it is very hard to make a decision and often there isn't anything out there available.

Kani


Thu May 03, 2007 7:40 pm
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Joined: Sat Aug 19, 2006 5:01 pm
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Hi Arianne,
My Mom passed with LBD in Feb. I check the site once in awhile and your post caught my eye. It's wierd to read my past posts and see what a bad place I was in! I am going to tell you how the disease progressed with my Mom. Everyone is different, but this was our experience.
My Mom had a slow decline for 4-5 years. We didn't even notice it at first. This smart, beautiful woman started saying she was too tired to play bridge, she was an avid reader and suddenly was reading the same book for weeks and weeks, then, her hair wasn't clean, her clothes had stains. This was all very gradual. She (and Dad to some extent) covered well. She had very general and generic responses to questions so that almost any question got an appropriate answer. The big "HELLO?" was when we noticed she was calling people by the wrong names, didn't recognize her grandchildren, we found dirty undies hidden in drawers and she developed a tremor. Now, this is 5 years out. My Dad passed away in March '06 and we moved in to stay with her. That was the start of a really rapid decline. I understand a loss of loved one, a move, a surgery can all cause a "crisis" for a LBD patient. So, from March to about September she really went downhill. She also HATED showering. She needed contant care and we hired someone to stay with her during the day while we were at work. In December she started getting UTI's. In Jan pneumonia and we started hospice. In early Feb, she gradually started eating less and less. Then she refused liquids, slept most of the time. Slipped into a coma and passed away Feb.11.
I am sorry that this post seems long, but my point is, they can putt along for years with minor symptoms and then crash. And when they crash, it's fast, or at least it was for us. The other bit of info I want to pass on is that what I have read says LBD pt's only live about 7-8 years after diagnosis. For us, it was faster. So, I hope this helps. Good luck with your Dad.
Sallyann


Sun May 27, 2007 1:09 am
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Arianne wrote:
I am curious about a couple things. Can members give me an idea of the typical life span of LBD individuals. Can you relate experiences of what the last 1-2 years of life were like.
Arianne


Hi Arianne,
This is a loaded question as you know many are so different in this illness, for us we started out with the mild dementia, things like not knowing why he was at a store or calling me from a store to say I know I am here for a reason but I forgot, getting on the wrong side of the road, constantly writing notes to put in his wallet, being very secretive and leary of everyone around him, not believing anything anyone said to him, then one night he got up to answer the door and of course no one was there and had a major fall, along his gait getting worse by the day and at this point he could no longer turn without help, me not understanding what was going on other than I thought he was losing his mind' In a sense he was " But I thought he was having a break down, his moods swung like a door from time to time and those times became closer together as time wore on, I lived constantly on egg shells always waiting for the explosion to happen and then one day all because my daughter called me and my husband didn't want me on the phone he approached me with a short handle sledge hammer and threatened to smash the phone then me, that was the defining moment for me I knew I had to get him help or I couldn't live with him, I had a child still at home.You know the rest we went from DX to DX and then the day came when I was in the waiting area for an appointmet and I found a paper on Dementia's and about 1/2 way down LBD was mentioned and I remember thinking this is what he has.That very same day the Doctor put it into words for us LEWY BODY DEMNTIA!
The last 18 months were hard, he lost his walking abilities even tho I kept up the constant PT but he lost the ability to follow directions, then we did massage therapy for a long time to help keep things from becoming stiff but they still did. He died in 2005 in Oct and the april before he again had a fall in the bathroom and fell back on the tiolet and hit it so hard he actually broke the toilet and he fractured the T-12 in his spine, that seemed to be the beginning of the end for him, 5 weeks later he had the first aspiration and at that point I knew he couldn't be left alone for a moment because everytime I tried he would try and get up and do something.He went from infection to infection He could no longer eat food unless it was pureed and by the time Oct rolled around he had 5 aspirations, as time went by he became weaker and weaker, but I put a lot of blame on some of the meds he took earlier on I think they made things so much worse for him but when he was in the hospital or rehab during the last 2 yrs when he got out of hand they wanted to keep him quiet so they gave him many drugs which are so bad with people with LBD.( I at the time didn't know any better)The final blow was just 2 weeks before he died I had to run into a drug store for my Mom who was with us at the time but aged, Jim managed to get out of the car even after she kept telling him not to and of course couldn't stand well by himself fell and hit his head on a concrete car stopper in the parking lot, next thing I know someone is looking for me , there was an ambulance on its way, Jim received 9 stitches and we were sent on our way home, he was never the same after that for the next 2 weeks.
I know this is long and there are so many details, not sure what I could have left out, I wanted to help you see the whole picture, My husband was a very different person in LBD.
As to the day care what I would try is going with him the first time and see if that eases him in to it , let him know it is a social club for him. I hope it helps. Good Luck! :)


Mon May 28, 2007 8:54 am

Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
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Hi Arianne......

Irene pretty much answered your question as best as it can be answered. Everyone's different......brain cells are different even when afflicted with the same dern Lewy Bodies. I'm not sure that anyone can really know exactly how long this disorder lasts because it's almost impossible to know when it all started. If we think back in time and try hard to identify behavior that may have been the start of everything, we're hard pressed to come up with anything concrete. After all, we're human and we all do some strange things at times that are not necessarily indicative of any disorder. However, when we finally took notice that something was just not right with our loved one, I think that's when we say it all started even though it may have started years before but never manifested itself in a noticeable way.

My husband was still driving this time last year, and volunteering three days a week at our local hospital. He had some walking problems, but he had been diagnosed a couple of years earlier with PD and his stooped, shuffling walk was attributed to that. His mind was still working fairly well. LBD?? Who in the world ever heard of that? The day before Thanksgiving last year, he fell on the concrete sidewalk in front of the hospital as he came off volunteer duty. He broke his nose, got a bunch of stitches in his forehead and generally banged himself up pretty good. He spent the next 5 days in the hospital and has never been the same since. He's had two subsequent falls, far less traumatic than the first, but it seems like each time he got a bit worse.

So far I consider that we're lucky. He hasn't had any hallucinations or delusional thoughts that I'm aware of, he's very docile and agreeable, and his mind is still working well enough so we can communicate. On his "good" days, we can even discuss things. But, I see even that starting to slip away as his eyes more and more have that vacuous look, and it scares me. How long is left? No one knows, but I can tell you that I will do everything in my power to keep him safe and with me for as long as possible.

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Marilyn


Mon May 28, 2007 6:03 pm
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