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 sleep problems 
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post sleep problems
I really need some advice with how to deal with my Mom's bedtime issues. She used to be fairly agreeable, almost passive. We would do the shower, jammies, meds(including Xanax for her anxiety and agitation) and a smooth transition into bed.

In the last few days she has been wanting to get up after she has been in bed 40 minutes or so. She wants to get up and get dressed. I try to be flexable about her getting up, but I will not dress her again, I just put on her robe. 15 minutes later she wants to go back to bed. (which is why I won't dress her)!. This sometimes happens 2-3 times every evening.

We have even tried to repeat the Xanax dose without improvement in her sleep. She has never had a problem with the med before, and she has taken it for weeks, it's the lowest dose available. and used to work well. I wonder if the dose needs increasing or maybe a med change. But it's wearing me down. No good nights sleep since last Thursday.

I have noticed with her that she goes through different "phases" with this damn illness. Paranoia, falling, hallucinations, severe tremors, severe memory issues, weakness, all of these things "wax and wane". I am SO hoping this behavior will pass before I drop from lack of sleep.

Does anyone have any suggestions about to handle it? I tried feeding back what she is saying, "I know you don't want to go to bed, but it's 10:30 and you need your rest". Being patient and kind seems to give her the power to call me to get her up and down all night. But when she calls "help me", what am I supposed to do?

Suggestions PLEASE!!!!

Sallyann


Thu Jan 25, 2007 1:37 am
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Hi Sally anne,
Oh you poor thing I am sure this is very hard on you but lets see if maybe some of us can't come up with a fix for you so you don't drop from lack of sleep! I see that you mention your routine as being as being "shower, jammies and meds" How about trying meds, shower and then jammies maybe enough time to settle her enough for to go to bed and stay there , the other suggestion or question is she sleeping too much during the afternoon and if so maybe that needs to be adjusted as well and if those things don't help then it might be time to contact her DR. and hopefully can help, Hang in there , this too shall pass!


Thu Jan 25, 2007 12:46 pm

Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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Isn't life strange? Remember when our children were little - how many nights did you walk the floor with a colicky little one or soothe frightened children through the night? Sleep deprived was the order of the day then, and now here we are again only this time it's a parent we are caring for.
My only suggestions would to be perhaps gently explain your need for rest - perhaps Mom will understand enough. What about sitting with her until she goes to sleep - is she perhaps frightened about being "left alone" while she passes into sleep? Some favourite soothing music played very quietly?
Hopefully this phase will pass. I think Irene's suggestion about meds first is a terrific idea. Between that and a warm soothing bath, perhaps it will be enough to get Mom over the hump and into sleep mode.
Good Luck!

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"Im pedalling as fast as I can!"


Thu Jan 25, 2007 2:03 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Thank you so much for your suggestions. I do think I will start giving her meds a little earlier. It may help, though I hope this doesn't continue. Last night was very much out of the ordinary for her. She was awake ALL night. No exaggeration! We have a baby monitor and I spent all night sifting through the "please,help me" that was serious from the "please help me" that was just jabbering and running up and down the stairs. Finally, about 7AM my husband told me to go to the spare room for an hour. Well, he fell asleep and when I awoke 1 1/2 hrs later, I went downstairs and found my Mom on the floor of the living room. She was fine. No injuries. Great relief. Worked feeling like a zombie all day. But , 3 points I want to make are:
1. How does this tiny little lady who needs assistance with walking and ALL daily activities get over her bedrails and to another room?
2. How can she fall so often (2-3 x's a week) and not get hurt! I would break a hip for sure!
3. Why does this kind of thing happen the ONE day I try to grab an hour sleep and make me feel like a terrible person?
I am trying to be upbeat, but this is a long road and I'm running out of gas!
Sallyann


Fri Jan 26, 2007 1:55 am
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1. How does this tiny little lady who needs assistance with walking and ALL daily activities get over her bedrails and to another room?
2. How can she fall so often (2-3 x's a week) and not get hurt! I would break a hip for sure!
3. Why does this kind of thing happen the ONE day I try to grab an hour sleep and make me feel like a terrible person?

Dear Sallyanne,
1.In answer to your questions, I don't kow where they get the know how to do this or the srenght for that matter, this is something I lived with for a very long time, Jim slept in the hospital bed right in our master bedroom right next to my bed and he managed it many times and yet could walk or stand during the day!

2. Again I often wondered this very same thing, he fell so much you are right I would hav broken bones also, he did break a few but nearly as many as times he fell, may I suggest a chair alarm.it worked some of the time for us.

3.You can not beat yourself up , the reason being you are exhausted physically and emotionally, it really isn't only happening this way it just seems this way, what I am thinking is you need some respite, if you fall apart who is going to take care of Mom? You are doing the very best that you can sweetie, be kind to yourself! :) [/quote]


Fri Jan 26, 2007 1:51 pm

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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hI MY NAME IS PHYLLIS I along with my MOm is taking care of my mother in law Jackie. She is 74. Jackie moved in with us in August of 06. when she came to us Jackie needed assisttants with everything but could still function. Now things have gotten real bad. we only just got diagnosed with LBD. when she came to us we were told it was early stages of dementia. then we thought parkinsons now we think it is LBD. Jackie hardly speaks any more. walking is a chore. even going to the bathroom we have to use a wheel chair. every week we see changes of her getting worse. while reading your blogs my mother And I were laughing because if we did know any better you were writing about Jackie. We have to give Jackie a sleeping pill almost every night so that she sleeps. ambian is our choice right now. when the sleeping pill works she sleeps and can function the next day. If the sleeping pill does not work then we listen to her talk all night. she does not have the energy to get up anymore but she will listen to her talk the entire night. we also have monitor to listen all night. eating has gotten real bad lately as well if she does do it herself it real messy. showers are getting real tough for us to do.
I do have some questions if any one can help that would be helpful. I have not been able to find the answers to these questions.

1. Our doctor said the people that have LBD die faster then someone with just Alhm, dementia, parkinsons. What do they die of. Jackie takes blood pressure meds, depression meds. So she is not a sickly person, what causes death???
2.How bad will the stiffness get, we are already noticeing her hands seem to bend inward.

reading about your loved ones falling. Jackie legs just seem to give out on her eveytime we try and get her to walk. sometimes if we can get her focus on us she will stand up and walk a little further.

At night sometime when she is not sleeping and talking she will let out with scream at the top of her lungs. this coming from a person who hardly speaks at all. and if she does its real low and you have no idea what she is saying.

thanks for letting me chime in and vent a little


Fri Jan 26, 2007 9:09 pm
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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My Mom and I would sneak and watch JAckie because like your Mom Irene Jackie needed help getting into and out of bed. she would fall out of bed or be hangin half off the bed when we would check on her. we don't have to worry any more so much now every now and again she still trys to get out of bed. reading your blogs My mom and would be shocked how ,much they are similar.


Fri Jan 26, 2007 9:12 pm
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Joined: Thu Apr 26, 2007 10:11 pm
Posts: 7
Location: Kingsland, Arkansas
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I haven't made very post to this site, I am fairly new to this site. I do read as much of the new information as I can. I am currently helping care for my grandparents and my mom who has LBD.
My dad is her primary caregiver and I help as much as possible they just
live a couple of houses from me.
My dad has been having alot of problems with my mother not sleeping
at Night.
I have found many post about LO sleeping to much but this is the
first one I have seen that is some what like my own situation.
My mother takes a few short naps during the day, and then she may sleep well that night, or she may be up several times a night not knowing where she is. Telling my dad to take her home. She wakes up telling him that there are snakes in the bed or baby poop in the bed. (Yes baby poop)
She has even seen cows in the bed. Yelled at my dad demanding to go home. Sometimes this goes on all night long.
If he keeps her up during the day and don't let her have a nap then she is usually awake all night long. She looks wild... No other way to describe it.. Her eyes are wide open she sees strange things, she sees people talks to people, talks to the wall. Alot of the time we cann't even tell what she is saying.. Her words slur, she is more unsteady on her feet a couple of times she has fallen.
She is currently taking Seraqoul 400mg broken up into 3 times a day (100mg breakfast, 150mg lunch, 150mg supper.) She also takes Exolon. Her doctor ordered a new drug for her this week to help control her shaking. Her hands trembel so bad she cann't hold onto anything. I cann't remember the name of it but it started with a "C". My dad gets her meds through CHAMPVA so we haven't gotten it in to start yet.
My question on this is "Is there anything that will help her sleep?" I have seen alot about meds to help wake them up but we need one to help her sleep.
Even on her naps during the day she does not sleep a sound sleep. She talks in her sleep, mumbles, wakes not knowing where she is. Daytime
is easier to handle, Night time is killing my dad. My brother still lives at home he is 26 unmarried and on bad nights she keeps them both up.
Yelling take me home. There have even been times when she wakes them both wanting to call 911 that someone is trying to kill them.. Somethings you can kinda ignore or play along with things like this you cann't. Her nights are just getting worse. Her hallucinations are getting worse. I am lost don't know where to go from here and our doctor I believe is getting to that point.
Someone please give me some helpful information....

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Marsha
Mother age 54 has LBD .


Fri Jun 08, 2007 12:54 am
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Joined: Mon Mar 12, 2007 8:29 am
Posts: 69
Location: uk
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Hi Marsha
Its so painful isn't it? knowing what terrible things our LO's see during the hallucinations. This was one of the worst parts for us, being unable to stop them.

Only by letting our Mum know that we believed what she was seeing but were unable to see them ourselves, did we manage to calm her. We're now in a situation where, as long as we listen and try to reassure her that the things she sees can't actually hurt her, that she has almost come to terms with them. She sees mostly some kind of people with distorted bodies and faces, almost alien in her descriptions.

Your Mum is so very young to be going through this, I'm guessing your Dad is still holding down full time work whilst trying to care for your Mum? So he does need his sleep and also your younger brother...I don't know that much about the medication but others do and I'm sure they'll try to help you out with that.

I would suggest that it's the fear of the hallucinations keeping your Mum awake. I know at first our Mum would try to get the people to leave the house and got into all sorts of trouble trying to defend herself against them during the night (she lives alone at the moment). Although she recently had a Urine infection which caused other problems she seems able to sleep quite well during the night and I think its' because her medication is quite stable.

I hope you can find the answer for your family.

Kind regards
~Dawn


Fri Jun 08, 2007 8:44 am
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[quote="Marsha"] My dad has been having alot of problems with my mother not sleeping
at Night.

Hi Marsha, Is there some thing with her meds that has changed to cause the Hallucinations to become worse?
Recurrent visual hallucinations are very common in LBD. REM sleep behavioral disorder (RBD) is also a supporting
feature common to many with LBD. If your Mom is "waking up" at
night with hallucinations, RBD may be the reason. Normally our brains
provide us with a skeletal muscle atonia during REM sleep that causes
our muscles to be in a relaxed state while we dream. When a LBD
patient with RBD has a dream, their bodies may thrash about or act out
their dreams in their sleep because their brain is not providing a
necessary "paralysis" to keep the body still while dreaming. The more
violent the dream, the more active our loved one reacts. They may even
"wake up" and still continue their dream that seems very real to them.


Fri Jun 08, 2007 7:36 pm

Joined: Thu Apr 26, 2007 10:11 pm
Posts: 7
Location: Kingsland, Arkansas
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Thanks,
As for my dad still working, no.....Thats another worry of mine my dad
has been disabled since 2000. He has had a stoke and 2 heart attacks....Which worries me to death that the stress of trying to care for my mom is actually going to kill him too....
STRESS........ How much can a person take.... :?:

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Marsha
Mother age 54 has LBD .


Fri Jun 08, 2007 11:39 pm
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