View unanswered posts | View active topics It is currently Wed Apr 23, 2014 11:46 am



Reply to topic  [ 15 posts ] 
 MIL stays up all night 
Author Message

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post MIL stays up all night
My MIL is newly diagnosed with Lewy body dementia. The problem we have is that she stays up all night long and sleeps until noon. This is not a new behavior for her as she has been doing it for a very long time. Sometimes she gets her sleep cycle on the right track for a few days then she is back to staying up all night. She lives with us and she often wakes us during the night by walking around turning on lights and sometimes if she sees something that scares her she will yell out loudly and my husband will get up to see what is wrong. Like last night she screamed really loudly and he went out to see what was wrong and she said our cat had his paws under her door and she thought he was hurt but he wasnt. I am wondering if we should ask the DR to give her something to help her sleep at night. Her wandering around all night long is very troublesome to me. We lived with her not long ago and she burnt her house down trying to cook something on the stove, she turned the stove on and left it and it caught fire destroying the whole house. We are very careful to take the knobs off of the stove and unplug the microwave so that she wont be trying to cook while we are sleeping but i still dont like the fact that she is up all night without supervision.At one point she had cancer and was undergoing cancer treatments for it, she was hospitalized and had really bad delusions and paranoia for about 3 weeks. We hadnt had her diagnosed at that time but the hospital told us it was some sort of dementia which i had been suspecting for many yrs because her memory wasnt quite what it used to be. She doesnt have the delusions or the paranoia so much anymore and is pretty much back to her normal self except her short term memory is not so good on some days. She has been taking Aricept for the last few weeks which i dont know if it is helping her or not. Any advice would be appreciated.


Tue Nov 19, 2013 10:30 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3122
Location: Vermont
Post Re: MIL stays up all night
Trying to live with someone in your house who is up all night, has already burned one house down, and has been dxd with LBD would be very worrisome for me, too. If you can work with her drs. to get her on some meds that would help her relax and sleep, and try to get her into a routing (like with newborn babies), and/or doing something to keep her confined to either her room, or a few rooms of the house where she can't do any harm, would be things I'd be trying. You don't need to have everyone else's health compromised so this is of the utmost importance for you all to be safe and to be able to get good, regular sleep.

The "up all night" issue and incontinence issues are often what precipitates a LO having to be moved to a facility where they can handle this sort of behavior with a staff of people. You may not feel it is needed now, but I'd check into facilities where she will get good care when you are not able to handle her level of need. Knowing what is available and getting on a wait list at a place that you have checked out will be a lot better in the long run than if she has a sudden and dramatic downturn and you need to find a place literally overnight or in a day or two. That has happened to many people and it is a major stressful situation. Being prepared will serve you well in case you are no longer able to care for her in your home.

Good luck, and stay in touch, 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 Nov 19, 2013 11:05 am
Profile

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post Re: MIL stays up all night
Thank you Lynn for your reply, for the most part she seems to be very normal, she has a few things she obsesses over like for instance, filling the ice container it has to be all the way to the top all the time if she takes a few cubes out she has to replace them and she cant stand to see a dish or utensil in the sink if it is there she will wash it. We do have outbursts from her on a weekly basis where she says we dont like her or dont want her here and she screams and rants for awhile but eventually calms down. Her memory seem fairly good for the most part except some short term things she can remember she has a drs appointment but not what day or time. She cant remember what she had for dinner the night before and things like that. Her burning her home down is what made my husband finally decide to have her looked at for her memory problems he refused before saying it was old age when i have known since 07 it was much worse than that. I dont think he would ever place her in a facility at this point because she still is quite aware of most everything and he knows she would not take that very well so I dont know what to do. Its unnerving to me to have her wandering around the house at night when we are sleeping.


Tue Nov 19, 2013 11:47 am
Profile

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post Re: MIL stays up all night
I forgot to mention that she is very stubborn and does not like to be told what to do or even the suggestion that she do something. She is going to do things her way or not at all. Im afraid if the DR gives her something to help her sleep at night and she figures out it makes her sleepy she will refuse to take it anymore. that is just the way she is


Tue Nov 19, 2013 11:49 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3122
Location: Vermont
Post Re: MIL stays up all night
Sounds just like a lot of many of our LOs. I'm not suggesting that it is time to place her in a facility right now, but with the huge declines a person with LBD can experience, literally overnight, it is good to have a future plan. The future plan may be full time in home help, it could be a move, etc. This was our experience, and there are others who have had similar ones:

My dad was living alone, he was having some short term memory issues and his walking was not good at all. A week after I had get him to give up driving for everyone's sake, he was lying on the floor at 5 AM, paralyzed from the neck down, was mostly incoherent (but good enough to grab his cell phone and call neighbors for help), incontinent, etc. So here he was, he had been living by himself, had had help coming in (at my suggestion) for a few hours a day, and had just recently been together enough to drive. Literally overnight he was like a newborn infant, unable to do anything for himself. He was in the hospital for a few days with NO diagnosis as to why he'd taken such a sudden downturn. I had to find a facility that would take him, with 2 days' notice!!! Luckily, about a month before all this happened I had taken him to an ALF and he decided that he would move there as soon as they had a room available for him. So, he went from independent living, to a hospital, to two weeks in a SNF for rehab, then to the ALF, all within about 3 weeks. I don't know what we would have done had he not already been on the list for the ALF!

Good luck, and come back here often. 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 Nov 19, 2013 6:14 pm
Profile

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post Re: MIL stays up all night
When she was in the hospital several months ago after having chemo and radiation for cancer she got so bad that we thought about an ALF we went and looked at places and found one that suited all of her needs and we talked with them about having her placed. we did go ahead and bring her home and most of what was happening with her when she was in the hospital improved she no long has the paranoia and the delusions and she can use the restroom and walk on her own again which she couldnt do while she was in the hospital and shortly after coming home. She can pretty much care for her own needs but of course she dont drive and i never let her cook. About once a week though she will get very angry with us about something or another usually we dont even know why or what it is about but she will come out and tell us she wants to go to a nursing home or get a room mate or something because she knows we dont like her and dont want her here. It usually will go on for several hours before she gets over it and everything is fine again until the next week. To be honest with you, most people dont even see that she has any sort of problems. She had an MRI and was given all of the tests at a memory care place and that was his diagnosis. she doesnt have any parkinson like symptoms she gets around really well for her age. If you are not around her constantly you dont know anything is wrong but we see the short term memory loss and the days when she is just a little bit off no on else does. She went to stay with her sisters in a different state a few months ago and she stayed with them for 3 weeks and each of them told us they didnt see anything wrong with her so i get the feeling they think we are making it all up.


Tue Nov 19, 2013 11:03 pm
Profile

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post Re: MIL stays up all night
I do have a question not sure if anyone knows the answer or not. I have been noticing something i hadnt noticed about her before. She has been singing constantly. I dont know if this has anything to do with LBD or not but i never noticed her doing that before until the last couple of weeks.


Tue Nov 19, 2013 11:06 pm
Profile

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: MIL stays up all night
My mom sings or whistles to herself all the time, too. She also talks to herself a lot. It's sort of a
Very low whispery kind of voice. She doesn't do it when we have visitors, usually just when her and I are alone. I think it's because she's very comfortable with me as we seem to be attached at the hip 24/7. Lol!
She also is awake more at night than during the day, but we have escape proofed our house so she can't really get into any trouble. She turns on the television or reads and if she needs me she has a bell she can ring for me. She hasn't been able to do anything in the kitchen for a couple of years and walks with a walker at home, we use a wheelchair when we go to doctor appts, etc.

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Wed Nov 20, 2013 2:52 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3122
Location: Vermont
Post Re: MIL stays up all night
Worried - it sounds like your MIL is still at the point where she can do "show time" really well when she needs to. That eventually will get harder for her to do until she reaches the point where she doesn't have the stamina to "keep it together" when she needs to. Then it will be apparent to everyone that she does indeed have an illness. I remember those days with my dad - I was the one for whom he was so expert at "show time" and when I wasn't with him I'd get calls from neighbors and friends asking me things like "why does he only talk in a whisper now?" or "he's become really unsociable" or "he fell on the floor and couldn't get up and called me to help him up. This is the 3rd time this month." And so on. So I was the one he was fooling, whether on the phone or when I was with him. Eventually he wasn't able to perform so that he appeared fairly normal in front of me and others.
After his hospitalization, rehab and moving into the ALF, he regained enough physically and mentally that he was able to do showtime for a while in front of his drs., and then I'd have to stay after the appt. and tell them what he was like typically.
Singing and whistling incessantly aren't symptoms I've heard of before, but I'll bet there are others for whom this becomes a symptom. It'll be interesting to hear who else has LOs who do this. 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 Nov 20, 2013 10:43 pm
Profile

Joined: Mon Sep 02, 2013 1:28 pm
Posts: 18
Post Re: MIL stays up all night
You have all be so helpful and I want to thank you for that. I am very new to this disease and im trying to learn everything about it I can. I think ive read just about everything I can find on the internet but it is nice to have some place to go to talk with others who are going through the same things. Thanks you for answering my questions.


Thu Nov 21, 2013 8:39 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3122
Location: Vermont
Post Re: MIL stays up all night
This was an incredible place for moral support for me when my dad was alive. I honestly don't know what I would have done without this forum back then. And, I've made some really good friends on here! Come back as often as you want or need to! 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.


Thu Nov 21, 2013 9:39 am
Profile

Joined: Wed Jan 08, 2014 8:00 pm
Posts: 3
Post Re: MIL stays up all night
My mom has started to get up at night every hour on the hour. Sometime walking around. Is there a sleep remedy that anyone knows of? My 88 year old father is the caregiver at home. We have people come in during the day, but he won't rest. He does not want anyone at night because he said he would get up anyway. I'm more worried about him that my mom at this point.


Wed Mar 05, 2014 12:38 pm
Profile

Joined: Mon Nov 25, 2013 7:33 pm
Posts: 25
Post Re: MIL stays up all night
My mom had terrible sleep issues. She was put on Seroquel and depakote and it provided the best sustained results for her in sleeping through the night.

_________________
Marian, daughter of mom [82] diagnosed with LBD after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Wed Mar 05, 2014 9:37 pm
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 160
Post Re: MIL stays up all night
Hi Cheryl,
My mom too was on Seroquel and that seemed to help with the sleep issues. My father too was the only one there at night and was up many nights dealing with everything. It really wore on him and it showed in his disposition and in his health. If there's any way to have someone else look after your Mom at night so your Dad gets a good sleep, I'd do it. I know from my experience that it can take ALOT of convincing!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Thu Mar 06, 2014 12:30 pm
Profile

Joined: Mon Jan 27, 2014 11:10 pm
Posts: 49
Location: Canada, Ontario
Post Re: MIL stays up all night
When I was working in nursing we would try our best to keep the person who had turned their day into night and night into day by keeping them active durng the day so they could not sleep, this usually worked well. I find that when my husband is active during the day 'at he Day Program" then he sleeps well at night. He does on other days sleep a lot and gets up a few times during the night and wanders around the apartment but returns to bed.Don't know if this helps or not. Anne


Thu Mar 06, 2014 1:28 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr