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 Night time solution ?? 
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Night time solution ??
A new day begins and my father was up most of the night again.
One of my PSW's suggested setting little "traps" up around the house to distract him from getting into other things.
So, last night before bed I set up a pile of colourful plastic cups on the kitchen counter, a pile of colourful blocks on the coffee table and a put all my throw pillows on the couch. For the first time in months non of the regular stuff was moved but the blocks, cups and pillows were scattered around the house.
Interesting....
I am baffled as to how a man who can barely move without assistance all day long can get out of his bed numerous times in the middle of the night and wander around unassisted...?
Does anyone have any good solutions to deal with night time wandering. Other than sitting up all night watching?
Thanks,
Allison

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Wed Aug 04, 2010 8:35 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Night time solution ??
I asked a neurologist a similar question -- how can someone not walk during the day (because they can't walk) but be very active and sleep-walk at night? I was told that these are different motor pathways -- one used when awake, one used when asleep.

Can you address the wandering through medication at night?


Wed Aug 04, 2010 11:29 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Night time solution ??
I have no idea how a person can wander through sleeping pills but my Dad does it! I no longer give him anything as it does not keep him asleep and I notice the next day all his symptoms are worse so he must be reacting negatively.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Wed Aug 04, 2010 12:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Night time solution ??
Have you tried all the medications listed in Dr. Boeve's "Continuum" paper for dealing with sleep problems?

Maybe your father feels worse because he's not getting any sleep?


Wed Aug 04, 2010 7:36 pm
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Night time solution ??
I will look those up. So far the only medication for sleep is something his geretrician has prescribed for him. I don't have it with me and can't remember what it is called. Last night he was up the entire night every hour and I was up with him since 3:00 am. I am trying to get emergency respite care for a couple of nights as i haven't slept more than an hour or two a night for over a week and I am burnt out and feeling ill.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Thu Aug 05, 2010 8:28 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Night time solution ??
I hear you loud and clear! I have been through this with my husband. He is finally sleeping for almost six hours at night but seldom takes the afternoon naps he used to take. His neurologist says his 'sleep center' is 'broken'. I do hope you find the right medications. It's a very individual thing, even within LBD. What works for some does not work for others. Did you know that lack of sleep is the number one reason for placement? And you will have to consider that rather than continue to sacrifice your health. You are in my thoughts and prayers!! God bless you!

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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.


Thu Aug 05, 2010 9:46 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Night time solution ??
My oh my 8 hours sleep last night while my ex-husband (bless him) slept on the couch and got up with my Dad hourly through the night. My ex could not believe this is what I have been doing for so long. Anyway, I feel pretty good today - wonderful what sleep can do! I had a chuckle yesterday when the LTC placement counsellor told me that LBD was a complicated disease which takes a lot of resources to manage and treat! No kidding.

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Fri Aug 06, 2010 9:01 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Night time solution ??
Glad you finally got some sleep. I well remember a couple of years ago when my husband had to be hospitalized and I got six whole hours of sleep! Oh, my, that felt good! It is a difficult disease. Hope you find a good place for him that has the capability and compassion do deal with it. God bless!

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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.


Fri Aug 06, 2010 9:22 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Night time solution ??
mockturtle wrote:
Did you know that lack of sleep is the number one reason for placement?
I was looking through the postings at midnight last night... trying to figure out how to get Dale to sleep. He took his night time pills (Seroquel and Xanax) about 9 pm ... but did not go to sleep. By midnight, he was WIRED! He thought he was on a plane and kept asking when 'this thing' was going to land. He was terrified and hanging on to the bed railings for dear life.

At 1 am, I decided I had nothing to lose and so I gave him about 1/2 cup of German beer. He went right to sleep. He slept until almost noon today.

He is happy as a clam this afternoon....

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


Sat Feb 19, 2011 1:48 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Night time solution ??
I don't think that our culture has a sufficient respect for sleep. People brag about how little sleep they can get by on, as if it were a character virture. How many times have you read a self-improvement article that advised you to just set your alarm for a little earlier so you will have time for daily nail care, or cleaning your sinks, or keeping up with your correspondence, or ... fill in the blank. If they think it is a good thing to do they are willing to sacrifice your sleep to see that it is done. A couple weeks ago I was browsing a health magazine in a doctor's office and came across the advice that you would have time to exercise if you got up a half an hour earlier. I wanted to scream and throw the magazine acros the room! Study after study has concluded Americans get too little sleep. And yet here is a health magazine implying that the reason we think we don't have time for exercise is just that we fritter away too much time on sleep. Absurd and irresponsible!

It doesn't surprise me at all that lack of sleep is the number one reason for placement. It certainly would have driven us to that solution if we hadn't been able to get it under control (with meds). It is a double whammy. The LO doesn't get enough sleep and so is more difficult to deal with, and the caregiver doesn't get enough sleep and so is less able to cope. My attitude is, start with the least drastic remedies and work your way to whatever level it takes to solve the problem. Don't dally too long at any one solution if it isn't working.

I was with my bipolar brother this week at a session with a mental health social worker. Brother explained that he had trouble sleeping for a few days and he called his psychiatrist's office. They responed immediately with a call to his drug store increasing his seroquel dose. He was kind of surprised at how promptly they responded. The social worker praised him for calling in the problem without delay, and explained that the prompt response is because lack of sleep is a high risk factor for people with bipolar disorder. She really reinforced that he did the right thing and that he should call again if it comes up again.

Contrary to a lot of silly messages that imply the amount of sleep we need is purely a matter of discipline, I think that lack of sleep is a high risk factor for all of us. This is especially true when it is on-going, when the sleep we do get is interupted, and when we are under stress in our waking hours. Remember, sleep deprivation is used as a torture device!

Needing sleep is not a character flaw. Being assertive in seeking a solution for our LOs is doing the right thing.

(I know this is an old thread. My remarks are for those who encounter these posts by chance or via a search.)

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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


Sat Feb 19, 2011 3:29 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Night time solution ??
I'm sure that lack of sleep is a primary reason for placement. But also, lack of sleep literally can sabotage your health. I just read an article on the subject in the health newsletter circulated by our health insurance carrier. The CDC is reported to say that lack of quality sleep may increase the risks of developing diabetes, heart disease, obesity and depression. (I've read similar information elsewhere, but this newsletter just came today so it was at hand.) So, caregivers, remember that you need to keep yourselves healthy, too.

Julianne


Sat Feb 19, 2011 4:20 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Night time solution ??
Jeanne, I agree with everything you have said. None of the people who are busy writing those articles are consumed with the caregiving for a person with this kind of dementia. I quit going to a caregiver support group because my care plan was designed to get me to exercise as a means of coping with the burden of cargiving. How fun. Put an exercycle in the corner of the living room and jump on and off every five minutes so I can tend to some 'urgent need' or a really urgent need, like a fall.

I can carve out exercise time by not doing the laundry or cooking meals or I can take my respite time and instead of shopping for food and paying bills, I can exercise and then they'll turn off the electricity but that's okay because there won't be any food in the refrigerator to keep cool or to cook anyway.

Do I sound bitter? Miffed? Ticked off? Could be. Smiles, Nan


Sat Feb 19, 2011 4:22 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Night time solution ?? Update....
Dale has had an absolutely beautiful day today... so the small amount of beer I gave him at 1 am last night worked out for us.

Tonight, his delusion has been that his briefcase was stolen. I told him that I still had his briefcase. I said it was a gift from me and I would never let something happen to it. Dale said, "It's brown, isn't it?" I said, "No, it's black leather." He said, "Well, I'm so relieved that you have it. I've been terribly worried about it."

I'm hoping his mind is calm now - and that we don't need beer tonight. :|

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


Sat Feb 19, 2011 9:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Night time solution ??
Heck, I'd give him all the beer he wants! :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.


Sat Feb 19, 2011 9:12 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Night time solution ??
Beer/wine/liquor have always been a part of our lives--the 5 pm mixed drink while watching the news, the beer out on the deck, etc. I asked the neurologist if continuing that would be bad and he said not a problem. I feel that any source of pleasure at the end of their lives should not be taken away unless absolutely necessary.


Sat Feb 19, 2011 9:48 pm
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