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Jinx4740,

The room he sleeps in has no windows! I had his hospital bed set up in there for that reason. BUT we do have night lights on in other rooms, so when he does get up he wont fall..

I also have played with medications, he is on trazadone at night, the highest dose the Dr's want him on since they feel any higher will make his cognitive decline faster. He has his last dose of sinemet around 3 pm.. We see his neurologist and pysch dr's this coming Friday..
I cant remember what the med was (we have done many trial and errors) to help him stay awake during the day, BUT that made him too agitated and cognitive declined. came back to where it was after he came off.. That has been a problem with most meds, they seem to effect his cognitive too much.. PD is what makes him fatigued mostly.

We go to a monthly PD support group meeting with about 20-40 folks (depending n month) with PD, and fatigue is a big issue with about 60-70% of them.. Most DONT have the cognitive issues, some slightly.
He has sensitivity to many meds too. either cognitive declines fast or hallucinations, or delusions. fun fun!

Tomorrow, if its nice, I will load up his mobility scooter and my bike and the dog and we will go off and ride some bike trails for an hour or so, then he will be sleeping the rest of the day.. I do take him out a couple times a week or make him go out in yard and get fresh air even if he just sits outside (usually falling asleep) for awhile.

I have a hard time staying around the house and watch him sleep! Tho, I will still vacuum and make noise.. I use to not, but decided I want to get the house cleaned and NOT on my days off when he goes to day care..

It has taken me a couple years to do for myself.. I still feel guilty at times, but do it for my own sanity.. BUT there still are those days at times when I long for past hobbies/work..

I appreciate your trying to help.. You never know when someone else has an idea that you have not thought of.. :)
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Mymares,
Could changing the timing of medication help to realign his sleep cycle? What about one of those sunlight lamps they use for Seasonal affective disorder, and blackout curtains for the bedroom? You've probably already tried everything, but I wish I could help...
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I am use to it, sad to say.. He does go to day care a couple days a week.. Then I get my shopping, appts or just ride my bike..
He also will be going for 2 weeks for respite at the VA next month.. I am still undecided where to go, what to do..
I use to be a very active all day, but life has changed so much.. BUT, it is what it is, and most days I am fine with that.. There are days when I long for my old life and freedom..
Lately, he's been on a "is it time to get up kick" usually starts from 4am on.. I hope this ends soon.. It always seems like when I finally actually am sleeping! LOL

But to have him sleep all night would be the best present I could get!
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mymares, you have my deepest sympathy. That would be so difficult. I hope that you have some help coming in so that you can get some rest.
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My husband has PD, PTSD and mixed dementia's with LBD.. I cant keep him awake during the day, he is so fatigued all the time.. then he does not sleep well at night, between his PTSD and getting up constantly keeps me awake, even tho we sleep in different rooms with doors opened.. I would LOVE it if he slept a solid night thru, he may if I am lucky, sleep about 3-4 hours straight.
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I think any caregiver taking care of a loved one gets it. Thank you all for listening!
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It's funny. It's OK for parents of young children to express how happy they are when their kids are asleep. I was riding with another mother to a birthday party. The kids were not with us. We got in the car, and she said, "If we start driving now we can be in Canada before they miss us!" I was kind of shocked to hear her say it, but I knew exactly what she meant.
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Photoartc, this reminds me of a lesson from a seminar on blended families. When children have parents in multiple households, holidays can be very distressing for the parents. We were advised to celebrate the positives within the negative. Instead of feeling terrible that your children are going to be with their other parent for the holiday week, it is OK to say to your new spouse, "Hooray! We have a whole week to ourselves! Let's go to a ski resort!" or "Lets have our holiday meal at a fancy restaurant that isn't appealing to kids." You are not obligated to be gloomy. You should not feel guilty if you are happy that your kids are gone for a week.

That your husband sleeps 12 to 13 hours a night is a symptom of his terrible disease? How can you possibly be happy about that? Your fellow caregivers understand exactly what you mean. There is a blessing for you in this symptom. Don't hesitate to be glad and to take full advantage of it. (You might be a little careful who say this in front of, though, not everyone "gets it." We do!)
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My mother prides herself on never sleeping during the day. And she is up and down half the night. I would love it if she would go to bed in the evening and wake up in the morning like a normal person. Sometimes she gets up in the middle of the night and checks her blood pressure and sugar. Her doctor asked her why she did this -- he didn't approve. She said she just wanted to make sure things were okay. The worst nights are the one where she comes in my room and says, "I need to go to the hospital." I ask her why and she says something like her blood sugar is 170. I tell her it is normal and to go to bed. She does, but of course, I lie there wide awake.
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I guess I am lucky in that respect.
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Those early bedtimes are wonderful! My mom goes to bed absolutely exhausted about 6:30 or 7:00. But she gets up another 4 or 5 times before she actually gets uninterrupted sleep. Thank goodness she sleep 12-14 hours usually. That does include the up and down time.

It is a blessing!
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