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 Restless nights/Falls 
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Joined: Sat Nov 22, 2008 12:36 am
Posts: 5
Location: canada
Post Restless nights/Falls
I'm new to the forum and am so helped by what you are all going through - so often your story to me is "been there, done that"

I would like any suggestions as to how to keep my beloved in bed in the early morning when I would like to still sleep. Or what can I do to amuse him? I've tried videos, cds etc. to no avail. He prefers to wreck havoc - moving the furniture, opening cupboards, banging around, taking the covers of me etc.

I would also like to know the nature of the falls your LO's have. Mine falls backwards - almost daily once or twice. Says he feels he is hit in the back. A Caregiver noticed he was kind of "out of it" - glassy eyes - I'm wondering if we are looking at something besides LBD.


Tue Jan 11, 2011 8:06 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Restless nights/Falls
If you can figure out a way to get your LBD person to stay still, I will pay you for the answer. It is the one of the most frustrating parts of this illness. They do not remember, and they are bored. Del has had some minutes where he was fascinated by cookies shapped like animal crackers. He makes words out of them and is sometimes so proud he does not eat them for awhlie.

The falling backwards is a common part of Parkinson's Disease. It can also mean he is having sudden drops in his blood pressure. they go over like they have been hit by a 2x4. Also, one person wrote of their husband having 'sleep attacks'....narcolepsy. You need to follow up with your neurologist.

Welcome to this Forum. You will find lots of help and lots of people here who really understand what you are going through. Good Luck.

Smiles, Nan


Tue Jan 11, 2011 9:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Restless nights/Falls
It's strange, isn't it, about their falling backwards? My husband, at least, is always bent forward so I find it odd that he falls backward. But sometimes I think he bends over when standing to avoid tipping over backwards. He never did have the postural hypotension experienced by a lot of LBD-ers. He just loses his balance or sometimes gets his feet tangled up. I'm sometimes almost thankful that he's no longer ambulatory.

Oh, and welcome to the forum! :P

_________________
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 9:14 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Restless nights/Falls
Eliza,
Welcome to the LBDA forums, sorry for the need.
Yes I agree many would like the solution to the early morning issues ! I hope you find something that will help !

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Irene Selak


Tue Jan 11, 2011 9:47 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Restless nights/Falls
Eliza, Welcome, If you are able to sleep until early morning, enjoy it. As far as finding something to occupy your Husband's time, I haven't been able to find anything that doesn't involve my time too. We go for walks, he goes on most errands with me and waits in the car. We go out for breakfast twice a week with his friends and one of Frank's high school friends pick him up Sunday morning and go for coffee. I don't know that he'll be able to do that much longer. Other than that he's like your husband, looking for "something" in the cabinet, moving nic nacs and chairs around and trying to "fix" things. :x

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Jan 11, 2011 10:12 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Restless nights/Falls
Is there anything constructive that these husbands could do, to keep them occupied for a while and let them feel useful? My husband's job is folding the towels. We have baskets of washclothes in each bathroom that serve as single-use hand towels. With both of us on diuretics, let me tell you that we go through a lot of towels. 8) Three or four times a week I give him the laundry basket of clean towels and he folds them and fills several bathroom-baskets. Today he spent about an hour on the task. He can see that this is not make-work for him, that it is really something that needs to be done. When a basket is empty, he replaces it with a full one. When we are down to our last full baskets he tells me it is time to wash more towels! (He used to also wash them, but that is no longer practical.)

I'm not sure this is the answer at 4 am, but it has been a good daytime activity here for a few years.

Pairing up socks from the laundry is another useful task Coy can manage on his own. He brings in the mail and opens it. (I have to keep an eye on what happens to it next, but most of the time he brings it into my office.) There are so many, many things he cannot do anymore, and he still wants to feel useful.

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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 11:00 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Restless nights/Falls
Welcome, Eliza....

Dale passes out when the blood leaves his head so most of his falls are more like jello melting. His legs become rubber and can no longer hold him. Falls have happened mostly after breakfast when he says he sees 'stars' or 'colors.'

It happened this morning as I was trying to move him from the chair to his wheelchair. He could not make it from one to the other. I thought I had him up from the floor at one point but he passed out a second time. After that, I left him on the floor with a pillow under his head until help came. Later, he fell out of bed but his caregiver helped him back up.

He has also had the other type of fall when he sort of trips over his own feet. Once, he crushed a set of nesting tables. Recently, he merely pushed a small table over as he went down.

Dale also has 'attention deficit' and cannot be interested in anything for more than 15 minutes. When he is feeling strong, he wanders around the house picking things up and moving them around.

I never allow Dale to see the mail at this point. The mail makes him think he has every disease in the ads and that we are in deep financial trouble. He doesn't have the coordination to fold towels ... or work the remote.

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


Tue Jan 11, 2011 11:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Restless nights/Falls
Backwards falls is an *indication* of PSP (progressive supranuclear palsy). But this symptom can occur in other movement disorders as well. So, like with many symptoms, it's not clear-cut.

How many hours of sleep has your husband had when he's ready to get up in the morning? Does he also exhibit EDS (excessive daytime sleepiness)? If he's getting less than 6 hours of sleep and also has EDS, then speak with the neurologist about medicating him such that he gets more sleep. If he's getting more than 6 hours of sleep and has no EDS, then I don't see how you can keep your husband in bed. What about hiring an aide/sitter to be with him first thing in the morning? What about your sleeping in a separate bedroom from your husband?

The care team for your husband should make all efforts to prevent falls. One or two a day is a disaster. Have you sought the advice of a PT about this? Your husband needs to be escorted every place he walks, perhaps with a gait belt. The escorting person needs to know how to help break falls such that they don't cause injury to anyone.

Looking "out of it" or glassy eyed happens with many neurodegenerative disorders.

Does your husband meet the diagnostic criteria of LBD?


Wed Jan 12, 2011 3:20 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Restless nights/Falls
The hospital bed for Dale arrived late yesterday and the disruption was probably the reason for his restlessness. I gave him Seroquel 50 mg at 7 pm and he was wide awake at 2 am - complaining and uncomfortable.

He didn't like the way the new bed felt. (It's not a Postur-pedic.) He wanted to get 'out of here.' He can no longer stand so I couldn't risk having him on the floor. After hoping he would go back to sleep for about 30 minutes, I asked him if he wanted a pill - and he did. I gave him Xanax..... and promised him muffins in the morning. It's 9 am and he is still sleeping.

Have you replaced the mattress on a hospital bed? Is an 'air mattress' an improvement?

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


Wed Feb 02, 2011 10:09 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Restless nights/Falls
Welcome Eliza and sorry for your need to be here. As far as falling and other disease symptoms, there are no clear-cut rules. Even if everyone on here's LO had only LBD and no other neuro diseases, you'd probably see some similarities and a lot of differences in symptoms.
From what I've read of those whose LOs have had brain autopsies, these folks seem to have had more than one neuro disease. The symptoms overlap, some don't have certain symptoms that a majority of the others have, and so on. It is complex and mind boggling.
I spent a lot of time trying to figure out what exactly was wrong with my dad. It took a lot of time and emotional energy, only to come up with "who knows, could be this, could be that, could be 3, 4, 5 or more different neuro diseases." Had I known that all that energy would still result in a non-answer, I wouldn't have spent much time reading, researching, seeing various drs. and asking tons of questions. It was very draining and frustrating.
I wish you the best in dealing with whatever the disease(s) are. It is a tough road but you will find lots of great support here. 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 Feb 02, 2011 11:48 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Restless nights/Falls
Ah, Lynn, how much clearer our vision is in hindsight, eh? :shock:

I think that there is some value in getting a probable diagnosis. It is important to rule out other conditions that might be more treatable or treated in different ways. If there is a strong suspicion of Lewy Body, it is prudent to avoid certain drugs. Having a label allows us to congregate with other caregivers who are likely to be experiencing some of the same things we are. While it certainly doesn't provide a roadmap, it does give some sense of what to expect on the journey.

You couldn't have known when you started your quest that the result of all that work would be a non-answer. You could have ended up with something much more specific given with a high degree of confidence. That wouldn't change the symptoms or your stress in dealing with them, but there would have been benefits to knowing. You did what you thought was best at the time. In retrospect, and knowing the outcome, you might apply your energy differently if you had it to do over.

Thank you for sharing your perspective. I think it is a useful one for people starting out on the quest to consider.

_________________
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 Feb 02, 2011 1:59 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Restless nights/Falls
Leone,

I'm not sure whom your question is addressed to as I don't think Eliza said anything about hospital beds back in January. (Maybe you intended to post this is another thread where you talk about the hospital bed?)

You can buy a twin Tempur-pedic mattress for a hospital bed frame. (We have two circulating in our local support group.) You can also buy a pillow cushion sort of overlay that goes on top of the hospital bed mattress. Or you can buy an alternating air mattress that is an overlay as well.

Robin


Wed Feb 02, 2011 6:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Restless nights/Falls
That's good to know, Robin. I've always wondered if 'regular' twin mattresses can be used on hospital beds because they have to be flexible.

_________________
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 Feb 02, 2011 7:45 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Restless nights/Falls
Perhaps my logic has gone with the wind.. :oops: .
but Dale's 'restless night' was in part because of an uncomfortable mattress so I've bought a Postur-pedic mat for his bed. I'll let you know if we like it.

Too many things are crowding my 75 year old brain right now to worry much about the appropriate route of this thread. It seems to me that 'falling backward' is not really related to 'restless nights' either.... unless you are spending a restless night falling backward off the bed. :lol:

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


Wed Feb 02, 2011 8:41 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Restless nights/Falls
That was a good one Leone Bernie :lol:


Wed Feb 02, 2011 8:49 pm
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