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 How much sleep do they need? 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post How much sleep do they need?
This is a trivial topic but I wonder how you 'care giving mates' cope with differences in the need for sleep? Dale needs 10 to 12 hours of sleep in a 24 hour period. If he doesn't have a satisfying nap in the afternoon, he wants to go to bed by 9 pm (or earlier) and he sleeps until 7 or 8 the next morning.

The problem is that he wants me to join him. When I do, I'm wide awake by 4:30 am ... and wishing I could still sleep. I tend to get up rather than lie in bed wide awake ... which sort of ruins my whole day because I'm tired by early afternoon.

I suspect many of you put your mates to bed long before your bedtime as you would a young child. As I said, it's trivial .... but I'm curious.

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


Tue Nov 16, 2010 11:36 pm
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Post Re: How much sleep do they need?
Leone,
Since Dale seems to understand a lot why not tell him that you will lay with him for a little bit and then get up and have your time.
I use to put Jim to bed at 7 pm only because he just couldn't stay up later and I am talking the last 18 months and he slept much of the day anyway, I would start his meds at 6 am and get him up at 6:30, by 10 am he was sleeping again, I would get him up for lunch and the same routine he would take a long nap in afternoon.I would get him up at 3:30 and we always ate an early dinner and by the time I was done cleaning up from dinner it was time to get him down for the night and those few hours at night before my bedtime were my time, sometimes I would be so tired I would just sit with remote in hand and even be too tired to change channels, the last 6 months maybe longer I got up every 2 hours to turn him also so I was exhausted all of the time. It was complicated to say the least!

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Irene Selak


Wed Nov 17, 2010 2:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: How much sleep do they need?
Thanks for responding, Irene. I knew this was a trivial subject but I was curious to hear how others are coping. What I'm hearing from you is that you became like the mother of a small child... and that's what is happening here as well.

I remember lying down with my little ones in the afternoon just to get their nap started... and Dale seems to need that as well. His delusions often keep him from relaxing and having me lie beside him seems to calm him. I often put some soft music on and that also seems to help him. When I'm sure he is sleeping, I get up and then come back later.

Dale isn't at the place where he sleeps most of the time. He just needs a long nap in the afternoon. He usually does well in the morning - unless we've been somewhere that is too much stimulation. As I said in another post, I put him to bed immediately on Sunday after we come back from church.

I can't imagine getting up every two hours during the night to turn him. Oh, my....

Thanks again.

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


Wed Nov 17, 2010 4:14 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How much sleep do they need?
There's not room for both of us in my husband's bed. He has a twin bed so that I can maneuver him around, as he cannot even turn himself.

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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.


Wed Nov 17, 2010 4:23 pm
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Post Re: How much sleep do they need?
Leone,
I never viewed my husband as child-like, I raised 4 children and he was nothing like them, I couldn't reason with him at times, with my children I could or if they didn't listen they had consequences, I couldn't put him in the corner and if I could would he learn from it? No I don't think so.

My husband was my life partner always!

Earlier on his mornings were pretty good also, then as time passed he just needed more sleep I remember doing everything we needed to do first thing but again we lived in FL at the time and most people do things there early to avoid heat of the day!

As to the turning every 2 hours, he had very thin sensitive skin, if he scratched even a little he brought blood to the skin surface so I knew he had to be moved often and with a great deal of pride I can honestly say he had no skin issues at the time of his death, he was mostly bedridden the last 18 months .

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Irene Selak


Wed Nov 17, 2010 6:50 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How much sleep do they need?
I had to laugh, Irene.... I don't put Dale in a corner either. He and I have a playful relationship. Early in our relationship, he told me he would always be a frog. No matter how often we kissed, he'd never turn into a prince.... but he is.... :P

And yes, he certainly has been my partner in business .... but I can't say that now. We talked with an AmeriTrade advisor on a conference call this afternoon and Dale kept trying to change the subject. The advisor knew - but he doesn't normally talk with Dale anymore so I think the advisor was a bit confused. I tried to 'interpret' what I thought Dale wanted to say. It was interesting.

Unhappily, Dale has become more child-like and that's OK.

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


Wed Nov 17, 2010 7:19 pm
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Post Re: How much sleep do they need?
Leone,
I am glad you have that type of relationship, as I believe we also had playful moments but I am in a different place than you are right now, I am just plain ticked off that I had to lose my husband when I was just 52 yrs old still raising a child as I know others have, we didn't even begin to live our golden years and my son lost his Dad at the age of 13 yrs old. I didn't mean to come off sounding nasty because that isn't my nature at all.

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Irene Selak


Wed Nov 17, 2010 7:44 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How much sleep do they need?
My dear Irene.... You did not sound 'ticked off' or 'nasty.' I didn't take it that way at all. I must admit that I had an image of you as a woman closer to my age. I suppose that was because you once lived in Florida. :P

Having lost your sweet companion far too early, you have a perfect right to be angry. I fully understand. In fact, my first husband left me after 26 years of marriage ... and they say that is like a death except it is deliberate and the person is still living. He went for a girl 13 years younger than I am and finally married her 20 years later. I was angry for a long time.

Dale and I have been married 27 years so the wounds have had time to heal and Dale and I are planning to be with my Ex and his wife at our grandson's wedding in July.

Life does get complicated, as you well know. Thanks for sharing and caring.

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


Wed Nov 17, 2010 8:00 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: How much sleep do they need?
Leone, I usually get Frank to bed between 6 & 7, most of the time he sleeps until 7:00Am. I've learned that if I'm tired, I go to bed 7:30-8:00 because I never know if he'll get up in the middle of the night and decide that's it, he's not going back to bed. He is like a toddler except I didn't have to shave my toddlers and I had high hope that they would stop wetting the bed. I started sleeping in the other room, I never wanted to move out of our room but Frank talks, hums, coughs and shakes all night. I do try to get him to sit with me in the den and watch a show that he use to enjoy. There doesn't seem to be any joy in his life.

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


Wed Nov 17, 2010 9:30 pm
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Post Re: How much sleep do they need?
John gets up btwn 7:30 to 9AM, then sometimes wants to take a nap a little later in the morning. Then another nap sounds good to him in the afternoon. He often goes to bed early, too. So much sleeping!
But he does have REM sleep disorder and apnea and has for years, so I wonder about the quality of his sleep some nights.
We usually have to sleep in different rooms if I want to get any rest. He acts out his dreams, has sword fights, runs, laughs, talks, has fallen out of bed, etc---puts on quite a show. So I have no guilt or worry about sleeping elsewhere after hanging in there for about 20 years as the "show" got more and more dramatic and I got grouchier and grouchier from sleep deprivation. (May as well laugh, so I won't cry about it.)
Right now he is trying to lose weight and his neurologist told us to put a tennis ball on the back of a t-shirt (or pajama top) in the center of his back to prevent him from sleeping on his back.
He said the dirty little secret about sleep apnea is that you usually lose it if you lose weight and sleep on your side.

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Nov 17, 2010 11:04 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: How much sleep do they need?
Irene, I am so sad that you had to lose your life companion so soon. And then had to raise a teenage son alone. Whew!
But it sure sounds like you took care of your husband with grace and gentle kindness. And now you are taking care of all of us caregivers.
You must be quite a lady.
Take care,
PatS

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Nov 17, 2010 11:08 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: How much sleep do they need?
Gerry - Thanks for sharing your experience. I'm sorry. Our experience is very different. Dale has been a sleep-walker since his 20s. Because he prefers to sleep on his back, he snored. In late January 09, his night time behavior became extreme. He peed in the bathroom sink because the 'men' were using the toilet and they wouldn't let him use it. He went to the kitchen to get a knife to protect us, etc. All sorts of frightening behavior kept us both up for hours during the nights early in 2009.

After the LBD diagnosis in August 09, we started immediately on Seroquel. That has eliminated the night time behavior and also the snoring. He still sleeps on his back but he rarely has an active dream. 100 mg Seroquel has made the difference. He also started using a condom catheter so he cannot get up to use the toilet and he never has a wet bed.

I know that some can't tolerate Seroquel and some won't wear a condom catheter but we've had great success with both. He is never up out of bed and we still sleep together.

My original question had to do with what others were experiencing ... and you made me feel very fortunate. I need to count my blessings! :P Thanks again.



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


Wed Nov 17, 2010 11:50 pm
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Joined: Tue Aug 17, 2010 9:20 am
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Location: So Cal
Post Re: How much sleep do they need?
Irene,
Thank you for sharing and always having a kind word to encourage those of us still dealing with this dreadful disease. I guess I always thought of you as "older and wiser" as well. I'm so sorry you had to go through your husband's illness at such a young age (I am 52 now) and I can't even imagine how hard and frustrating it is to raise a young man alone, just when he needs his dad. (It is hard enough watching my daughter lose her dad and she's 26.) You are quite incredible and we are lucky that you've chosen to stay with us. Hugs, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Nov 18, 2010 6:27 am
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Location: Acton, MA
Post Re: How much sleep do they need?
Irene, I too thank you, you are an inspiration and motivate us to keep on trucken.

Thank you,
Gerry

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


Thu Nov 18, 2010 7:08 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: How much sleep do they need?
Just for the record ladies it is my pleasure to be here, at least I can share what I did learn along my Lewy Path, as to my son he is now 19 yrs old and I believe that his Dad's passing had a silver lining as this young man has turned out to be a really great young person, never had problems with him ,Graduated HS and the same yr put himself through EMT school and he works towards Paramedic and that I thank his father for as I think all those yrs we (my son and I) went through the illness it made him such a caring person and want to help people. We laugh all the time when I tell him he will never be rich in money but he will be with doing what he loves so much!

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Irene Selak


Thu Nov 18, 2010 12:19 pm
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