Up at 2:30

Larry decided to get up at 2:30 this morning because he “had been awake for hours.” I was not amused. Took him down to the living room and turned the TV then went back to bed. Almost got back to sleep when I realized he would probably do something really stupid like try to make something to eat. Got up at 3:50. Got breakfast and coffee together. He ate then promptly fell asleep in his chair. The reason he is “up for hours” at night is he sleeps most of the day in his chair. Eight hours later he has now been asleep about 3 or 4 times. Currently he is asleep. All I have to do is do something else and suddenly he’s awake. I’m about to go do my workout for an endorphin fix. I need one.

[AliBee1]

Hi.I am having exactly the same problems with Nigel every night between 11.30 and 12.30. He insists it is time to get up and if I disagree he gets very agitated. I have tried saying yes ok but I need another 10 minutes sleep before I get up and this can work and he goes back to sleep. Sometimes a drink and soft biscuit help, without turning the main light on which is fatal. Some nights nothing works so I understand the need for an endorphin fix. Good luck AliBee

[Hidden in reply to AliBee1]

To date this is the first time this has happened. It better be a one time thing. I think doing a 15 hour day every day is enough. He will have to deal with it.

[carehope]

Hi Jeff ,

I can definitely relate. My courageous sister with PSP has a similar ongoing problem. Unless we have to leave home for an appointment , she is in bed all day, except for brief out of bed periods. Sleeping most of the time during the day. From after dinner around 7:30 onwards until approx. 3 a.m. , she is watching TV alternating with reading ( which has gotten very difficult to do ). I think that in my sister's case, the reason for the flipping of daylight and night activities is that the overwhelming majority of worthwhile television programming is in the evening. The dim light at night is also easier on her eyes. Per her wishes, she "lives" most of her hours in her bedroom with the window blinds closed. She refuses to experience any opportunities in the outside world.

As her main carer I find this very sad ; in addition to the obvious sadness that accompanies an illness such as PSP. However, when it is necessary that A. leave her own environment , she becomes obviously agitated and uncomfortable. I can relate to some of these feelings as can most of us , if we're able to imagine ourselves in a totally dependent position. My sister was never easygoing and was also totally fearless and independent , so given her incapacitation , her unease and agitation away from her quiet and controllable home is understandable. As she doesn't live with us , we have a rotation of live-in carers, including myself and my husband. At least my sister gets rest whenever she needs/wants it. As carers, we all try to rest when we can, with one eye open for A.'s next move ! Difficult all around, as all of these posts can attest to.

Sending you wishes for fortitude, rest when you can get it , and lots of love around you and your loved ones ! This site has definitely been helpful for info and sharing !

Take care !!

Elise

[Yvonneandgeorge in reply to carehope]

George is also the same he was up before 5 o’clock this morning banging on the bed, went on until after 8 o’clock, feeling very stressed, can understand how you are feeling, I bloody hate psp, here’s to a good nights sleep xxxx

[Hidden in reply to Yvonneandgeorge]

I am a morning person. Usually I am up between 4 and 5 daily. Larry was always a night person. Some days he would be going to bed as I got up. I really liked my morning to myself. That has all changed. A few weeks ago for some reason he slept until 6AM. I was up at 4. Oh, how enjoyed that morning. Like the good old days.

[racinlady in reply to Hidden]

Jeff,

I remember that hour or two in the morning very well. It was heavenly! Eventually, I needed those hrs to sleep myself after being up and down all night helping my husband. I would get up, take care of whatever his need was and he would be back asleep almost instantly while I would toss and turn trying to go back to sleep. About the time I would finally nod off, he would wake me again. The gradual shifting of awake and asleep times was at least part of my decision to finally move him to a care home. After a few months of so little sleep, I felt my own health going south. It took me about 3 months to re-establish a normal sleep pattern. I think there eventually comes a time when you have to consider your own health. I feel for you. Sending you a hug. . . .

Pat

[Hidden in reply to racinlady]

Thanks. This morning he heard me in the bathroom at 2 and decided at 2:19 it was time to get up. Went into his bedroom and told him it was 2:19. His reply was “No it’s not.” Told him it was and that I was going back to sleep which I did. So did he. Everyday is something new.

[doglington in reply to Hidden]

Fingers crossed it lasts !!

We have to appreciate the moment.

Jean xx

[Tippyleaf]

Ouch I know how that one feels. My husband shaves using an electric razor in bed every morning between 3-4.30am !!! I have tried every tactic to break the habit now I just let him get on with it. If we have an early appointment he is wanting to get up after his shave so we are not late. Since he takes more than 2 hours to settle every evening it is a short night on many a night!!

As Yvonne says I too hate PSP !!!!

Love Tippy

[LuisRodicioRodicio]

Hi Jeff166!

Although it is common to try to break it, we have established a routine that works quite well ... at the moment:

1) Breakfast with coffee, fruits compote, soft cheese and...(1 tablet of Sertraline 50)

2) Gymnastics and speech therapy exercises. (2 hours)

3) Toilet and shower,

4) Exit to the street and exercise walking (100 to 200 meters) or up and down 32 stairs, assisted by two people.

5) 2 mg, CBD Oil under the tongue before lunch. A small bombon to remove the bad taste.

6) Lunch (Mediterranean diet)

7) Siesta 2 hours.

8) Any activity outside the home (Shopping, museums, conferences, small excursions, visits to neighbors or friends, movies, etc.)

9) One pill of Lorazepan 1 mg. half an hour before dinner.

10) Dinner.

11) Toilet and diaper placement.

12) Bed and radio until she fall asleep.

Generally it works well ..... at the moment.

Regards.

Luis

[Hidden in reply to LuisRodicioRodicio]

Thanks Luis. Larry wouldn’t be incinded to do any of the physical things you recommend. He really doesn’t have the stamina at this point.

[LuisRodicioRodicio in reply to Hidden]

So sorry.

Hugs.

Luis