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 Excessive sleeping and dramatically decreased conversation 
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Joined: Wed May 26, 2010 12:53 pm
Posts: 12
Post Excessive sleeping and dramatically decreased conversation
Hi. I know there are other threads about excess sleeping, but I wanted to start this one to cover some other concerns I have with my father without derailing the other thread.

My dad has had LBD since about 2000. Anyway, he has started sleeping about 16-17 hours a day, and he has stopped using sentences with a few rare exceptions. In conversation, he is speaking less and less...the last time I visited him, he just spoke a few words and one sentence over the course of three hours. This is a dramatic difference from just six months ago, when he was talkative and generally much more mobile and awake. He also doesn't actually sit down anymore...he basically falls on his bed or in a chair. His lean is very bad. My aunt has health care guardianship, and won't put any of his kids down to speak to his doctors, so we really don't know what's going on with him. I live in another state, so I guess I'm posting this to get a feel for what stage he is in. I've learned pretty much everything from reading this forum and other good sources about LBD. Because I live in another state, I have to anticipate everything in advance, and plan accordingly.

I often feel like I'm groping in the dark about it. Even the stages are a bit confusing. I think my dad is very near end stage, but I'm trying to predict what to expect from here. He's already been on a feeding tube as a result of a neuroleptic medication he was prescribed last year. After he was taken off it, he seemed to get much better, but now he's coughing excessively even when he sips water. I also suspect that his dysphagia may be coming back, but again, I have to try to figure it out on my own. He is making some "mmmmm" sounds instead of talking...this odd humming just started this in the last two months as well. Is he headed toward mutism? I want to be sure I don't go to visit in a few weeks only to find him unable to speak. That would be devastating, as I want to be able to hold any kind of conversation with him before he passes, even single word conversations.


Tue Jan 18, 2011 8:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Excessive sleeping and dramatically decreased conversati
rkc, others who have been to the end of the journey can give you more specifc insight, and you've already read about end stage behavior in other threads. I'd like to comment on your need to "anticipate everything in advance, and plan accordingly." Whether we live a few miles away or on the other side of the continent or our LO is still at home with us, I think all of us long to be able to put a timetable to the future. How long with the stage they are in now last? What comes next? How long with that last? As much as we dread knowing the future, we still desperately want to. As far as I know, that just can't be done. We are pretty much forced to deal with the here-and-now. Yes, knowing in a general way what might be coming is useful, but few generalities apply to everyone, and timelines are hard to come by.

You want to "be able to hold any kind of conversation with him before he passes, even single word conversations." You know that you can do that now. Visit as often as your circumstances and the distance permits. Even if you could predict precisely when this will cease, would it substantially change your plans? If you knew that he would stop speaking at all on Feb 11, would you stop visiting after that, or would you manage your devastation, come anyway, talk to him gently, stroke his hands and his forehead, and just be with him? I know that we all want to know "when?" -- but maybe that isn't as important as we think it is, and in any case we can't know with much precision so we have to focus on the "now." (That's just my view, of course.)

My heart goes out to people caring for loved ones over long distances. This is a hard journey for all of us, and there are unique heartaches for those who watch from afar.

_________________
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 18, 2011 8:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Excessive sleeping and dramatically decreased conversati
We have several local support group members who have been mute for several years. We have one SG member who has been bed-bound for several years (five?) and who sleeps 18 or so hours/day. So I don't think the symptoms you've seen or heard about are indications of final stages.

The dysphagia he's experiencing is a strong indication that he could be entering the final stages. One small study was done that showed that those with autopsy-confirmed DLB died within 5 months of the onset of dysphagia. Either they got aspiration pneumonia and died, or they stopped eating/drinking and died.

I'm sorry that your aunt shuts you out. That must be frustrating and very sad. Have the kids tried communicating in writing with the MD to request that the MD ask the aunt for permission to update the kids? Have the kids tried communicating in writing with your father's attorney?

I've heard of people with PSP (progressive supranuclear palsy) - a non-AD dementia that mimics DLB - humming (for years). No one is sure why this is done. Some guesses: the person is trying to stay engaged in the conversation; the person is attempting to clear his/her throat (which is tickling due to post-nasal drip or saliva); or the person is comforted by this noise.


Tue Jan 18, 2011 8:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Excessive sleeping and dramatically decreased conversati
Is your dad receiving hospice services? Depending on the particular hospice org. where you are, they accept people that they believe have a certain amount of time, often 6 months, left. I think my dad was on hospice for about 5 - 6 mo. About 6 weeks before he died, they told me he was exhibiting final stage symptoms and behaviors. They were pretty accurate about trying to predict when he would die at that point. However, the afternoon he died they had just called me and said he had about 3 weeks left. He died an hour after that phone call. In the overall scheme of things, I think the hospice nurses and anyone who deals with dying patients probably have the best sense (if anyone does) when the end might come. I'm a planner too, usually, so I know how frustrating it is to be far away and feel like you are just in the dark about the timing of various things. My last conversations with my dad consisted of me talking to him, telling him stories, updating him on people he hadn't seen for a while. Most of the time he couldn't get words out but once in a while he'd say something that was clear thought-wise and enunciation-wise. Mostly he'd just look at me with very sad eyes because he knew we had no idea what he was trying to say. Just visit and do the best you can do under the circumstances. I'm sure he'll enjoy seeing you. 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 Jan 18, 2011 9:01 pm
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Joined: Wed May 26, 2010 12:53 pm
Posts: 12
Post Re: Excessive sleeping and dramatically decreased conversati
Thank all of you for your kind replies. I have a lot to respond to, so I need to think a bit before I respond in detail.

The need to KNOW is related to a feeling of control, I think. It makes us feel less helpless in the face of a situation that is truly beyond our grasp.

As for my aunt, she was court ordered last July to put all of dad's kids down to be able to speak with his medical caregivers about his condition, but she did not do it. Frustratingly enough, there's nothing we can do about it except file a motion of contempt against her, but of course that just means more money that none of us have. It's a long story, but basically, she works against us out of spite and anger (greed is an issue), and she can get away with it. I've lost a lot of faith in the legal system from this experience.

Dad is not receiving hospice services, I think because he still has an appetite and can swallow. He does cough and gurgle some, but the good thing is that he is still able, albeit with some difficulty.


Tue Jan 18, 2011 9:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Excessive sleeping and dramatically decreased conversati
Has your dad lost significant weight? Have you talked with anyone from hospice lately? There are all sorts of ways that a person can become eligible. In my dad's case it was "failure to thrive" I think. He was losing a lot of weight and that was the reason he became eligible.
Your family (aunt) situation sounds awful. I wish you the best. It's tough enough to deal with, without family members adding to the stress. 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 Jan 18, 2011 10:19 pm
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Joined: Wed May 26, 2010 12:53 pm
Posts: 12
Post Re: Excessive sleeping and dramatically decreased conversati
Thank you. I'm sorry about your recent loss.

I will have to run the hospice idea by my aunt, but I think it's definitely worth a try. I hear wonderful things about hospice, and I think dad would benefit from being there.

Edit: I think dad has lost some weight in the past two months, but I can't get a confirmation on that. His weight loss is minor compared to what it was during his reaction to the neuroleptic meds last year...he was recommended for hospice then for failure to thrive, and because he lost about 25 (?) pounds in roughly three weeks. I don't know why he wasn't admitted. He gained a few pounds back later on, but he looks slightly thinner again.


Tue Jan 18, 2011 11:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Excessive sleeping and dramatically decreased conversati
Thank you, and I hope the hospice thing works out for your dad. It is nice having someone you can really count on to be coordinating things and giving you info. that you might not be getting elsewhere. At least I hope they will give you the info. since your aunt is POA. 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 Jan 19, 2011 3:27 pm
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