Sleepy sleepy💤💤

[bazooka111]

Momma is so tired these days. She looks tired in her eyes, and is now taking afternoon naps pretty regularly. Up until now, she never took many naps during the day ... I’m afraid this is becoming the new normal.

I sleep with her at night - planning to switch to two twin beds vs the queen we are in. When she fell back in June, she slept alone and I had cameras that alerted me on any movement - but now she cannot walk but just a few steps (with my help) ... so I moved into her room and started sleeping with her. We now have a bedside commode, and she wakes me when she needs to go; that’s working out fine, except lately her legs are so stiff, I have to lift them back into the bed when she lays back down.

So many changes ... and it seems when you make an adjustment, something new comes along...

One day at a time....

[Hidden]

I got this back brace for the lifting and wish I had bought it a few years ago.

amazon.com/gp/product/B0026...

[bazooka111 in reply to Hidden]

Thank you!! I’m ordering one now!

[Dadshelper]

With these diseases it is best to plan for the worst and hope for the best. It always seemed when one issue was taken care of another issue would arise.

Ron

[rnpacu in reply to Dadshelper]

Kim

So sorry to hear this about your mom. Have you

thought of bringing in hospice to help you . Maybe time to have a family meeting with your siblings . Good luck.you and mom are in my prayers

Xo

Maria Elena

[SewBears]

Hubby and I shared a nice King sized 4 poster bed, it was two twins pushed together with separate remotes for position changes. Hubby kept falling out of the small twin so I replaced his with a Queen. We have a queen and twin pushed together now. Obviously there’s no fancy headboard. Lol. Anyway, he sleeps sideways and takes up all of the queen. I’m in the little twin as content as I can be but I get annoyed at hubby when he sneaks out of bed in the middle of the night. I wake in a panic the minute his feet hit the floor. I rush over during sleep to stop him from falling over. I laugh about it because he tries so hard to be quiet and he’s very, very loud! We do whatever it takes to keep them safe and comfortable. You’re doing a fantastic job for your mom! I read the other post about her being treated to a massage. How lovely!!!

[Doublereeder]

My mum is sleeping more in the afternoon too. At least with sleep there is no (or little) pain or worrying and that is a blessing of sorts.

[Railfan in reply to Doublereeder]

Unfortunately from my experience, when i'm asleep I still have the pain. I am currently not taking anything for it as I want to avoid pain meds as long as I can. When I wake up my stiffness is worse. Exercise with a mini-cycle machine, that can also be used for arms and hands, is helpful.

[Doublereeder in reply to Railfan]

I'm very sorry to hear that. I will look out for a mini cycle machine to see if that might help my mum too.

[Railfan in reply to Doublereeder]

I am in the U.S but this is what I use. I put it a non-slip mat on floor and table. Tension is adjustable and it can keep track of how I'm doing. I sometimes watch walking videos so I feel like I'm moving along.

amazon.com/Exercise-AGM-Dig...

[Heady]

Hey Kim, this is perfectly normal. Encourage them as much as you can, without eating into your outings. The most important thing is, YOU sleep as well, at the same time. It's a bit like having a new born, if baby is asleep, so should you be. Nobody, not even you, can carry on caring without regular sleep and we all know that is not possible with PSP.

Sending big hug and much love

Lots of love

Anne

[JA10]

My Mum also sleeps a lot during the day especially the afternoon. I think it is good for her as it gives her body a rest and hopefully help fight the symptoms.

When she looks tired, if I tell her, she often sais she is not, so I also think that the tired look is part of the PSP presentation. She certainly has a loss of expression on her face some of the time.

Your mum sounds like she is being looked after wonderfully by you, and I am sure that with all the amazing things you have organised for her, she will only want to sleep the minimum amount of time! Julie

[doglington]

I found Chris slept more and more but he was easy to wake if someone came or we were going out.

Like Heady says - it's like having a baby around. Make the best of wherever you are !

Jean xxx

[LuisRodicioRodicio]

Hi bazooka111!

After 7.5 years from the first symptom of PSP-RS the dream sequences are:

- Nightly rest from 10:00 p.m. to 8:00 a.m.

- Siesta from 2:00 p.m. to 5:00 p.m.

- Rest after the table of passive systematic exercise program and walk in the street on mechanical wheelchairs with seat belt and anti-bedsore : 12:15 to 13:00 and from 20:15 to 21:00

The patient has a 90 cm wide articulated bed with folding protective side bars.

At the moment we are stabilized.

Hugs and luck.

Luis

[daddyt]

I sleep at minimum an hour every afternoon - have been for five years. This disease is exhausting.

Tim x