Sleep

[bobbie45]

My husband was diagnosed with Psp in February he's not been right for 2 years he cannot do anything for himself I'm his full time carer. I can cope ok but he's in and out of bed 5 or six times in the night I have to put him back to bed as he cannot wrap himself up I get tired is this one of the symptoms please

[gypsywoman1947]

My husband was the same and it was exhausting , GP prescribed Amytripline just 10 mg and it has helped a lot, he was awake with nerve type pain in foot and needed to keep getting out of bed. he was also diagnosed about 2 to 3 years ago. Hope this helps , regards

[abirke]

What are the reasons he is getting out of bed? To go to the bathroom, sleep walking? comfort factor?

My husband got up 5 times a night to go to the bathroom. Now he is on Zolpidem to help him fully evacuate eliminating standing there for 20 minutes and only getting half the pee out...meaning another midnight run in two hours! he is also on Tamsulosin to help him sleep. He still gets up, but only 2x and he is no longer sleep walking. So you might want to talk to your Dr. about something like that.

Good Luck, and get some rest,

AVB

[Yvonneandgeorge in reply to abirke]

Hi Bobbie my husband also gets up 5/6 times a night to go to the loo he has a plastic bottle which we have many accidents with, he won't try anything else, no matter how much I try, I also feel very tired, but what else can we do? Doctor gave him so tablets, but George won't take them, he hates taking tablets, which is another problem I face, but we can only take one day at a time, good luck, hope you can sort it out Yvonne xxxx

[Opope in reply to Yvonneandgeorge]

Does your husband hate taking tablets because hus swallowing has been affected.

If so we had the same issues and were supplied with a tablet grinder. ...a godsend

[aliciamq in reply to Yvonneandgeorge]

I put the plastic bottles in a large coffee cans. We keep two bedside. I also put them on a childs step stool so he doesn't fall reaching to the floor for them. We have had good luck.

[Heady]

Hi Bobbie45, My husband is exactly the same. He is on so many pills to control his bladder. Only had a couple of full nights sleep in the last two years. At the end of my tether. Nobody seems to care! Not what you want to hear,I know! You have to get your doctor to do something. If only to put him on sleeping tablets and find a decent night pad,if there is such a thing! I have tried everything. This is my next request. That , or find someone to look after him at night.

Sorry I can't be more help, yes, I guess this is PSP, sucks doesn't it!!!

I haven't seen you post before. Glad you have found this site. It's a huge help, especially, to realise that you are not alone, that you are not the only person, up and down each night. One day, the researchers will actually ask us carers, what is going on with PSP and some progress might be made.

All I can say is, I know you are tired, but try, TRY, to keep as positive as possible and keep on this page. We will get through this together!

One day at a time!

Lots of love

Heady

[jillannf6]

YES IT IS IM AFRAID - I TAKE SOLEFENACIN WHICH CUTS THE TOILET TRIPS DOWN.TO 2 /3 ON A GOOD NIGHYT

LOLJILL

[aliciamq in reply to jillannf6]

Hi, Jillann🙂

[Yvonneandgeorge in reply to aliciamq]

Oh Jill lovely to hear from you xxxx

[Kelly55]

Hey bobbie, the same as everyone else said, you need to speak to the GP about meds. I also self referred my mum to the continence advisory clinic and they have been invaluable. Mum has amitryptyline for nerve pain and to help her sleep and we did trial tropsium chloride to help with the frequency and urgency of urination. Mum also wears tena pull up pants and I now have to intermittently catheterise her to fully empty her bladder. Men can use a variety of bottle options to collect their urine so don't have to get out of bed, they look too tricky to contemplate for women if you ask me. I also used to worry about mum falling in the night whilst getting up to urinate so now we have alarm pads from the sensory perception team on her bed no more sneaking around!

So go to the GP, contact a continence advisor, ask the neurologist and look into aids for bedtime. And get help with night care! Continuing health care or the personal health budget nurses should be able to advise.

We are all wandering around like sleep starved zombies but talking and trading tips on here helps! Hope some of this helps for your partner x

[Amilazy]

Hi Bobbie, it is a common symptom my wife up 3/4 time a night most frustrating when does not perform. Worst thing is it takes me time to settle get warm etc so sleep deprivation is worse for the carer, as patient usually drops off straight away or if not starts trying to communicate keeping you awake longer. Try the pills suggested I have recently asked my GP but they are not too keen on prescribing anything. You need to get your GP to recommend you and your husband to MArie Curie for night cover, they sit with the patient while you can sleep in another room, I still wake when Margaret wakes or moves but I do not need to get up so get some sleep if still disturbed.

Best wishes Tim

[NanBabs]

Hi Bobbie, sleep disruption is a common complaint with PSP it seems. P's favourite trick is to wake me (up to 5 times a night sometimes) then wait until my head hits the pillow before asking to pee again, sometimes successfully but often not. The frustration and tiredness can feel overwhelming and although I'm told I have the patience of a saint, I certainly don't feel that I have.

We have tried lots of tablets to control urination and sleep but none is totally successful to date.

You are certainly among people here who know and sympathise with you if it helps.

NanBabs

[abirke in reply to NanBabs]

Yes I know how that is NanBabs, my husband seemed to have the art of making my life miserable or giving me heart attacks by waking me through crashing to the floor reaching for his walker from the bed. And if he made it all the way to the bathroom, he would crash into the bath tub. Try getting a 200 hundred pound half asleep man out of the bath tub when you yourself are half asleep. I had a mind to just throw a pillow in the tub....let him sleep and pee at the same time hahaha no not really....

AVB

[cabbagecottage]

have you thought to ask the help of continence nurse , Men can use a sheath with bag attached . no in and out of bed anymore . Unfortunately my husband has become retracted so unable to wear a sheath now so uses pads .

they explained to me that once someone lays down the urine goes into the bladder .

amitriptyline helps my husband , toe pain is another symptom , I think from Dystonia

[bobbie45]

Thank you to all the replies don't suppose there is any Psp groups boston lincs it's good to no there are understanding people out thank you all again

[Tz2388]

After much trial and error, and changing sheets one or two times a night, finally found a diaper brief that works only occasionally wakes up now and seldom have to strip bed. It took over two years of hellish nights to get to this point. Zzzzzz

[Artteach10]

One of my husbands early signs was four years ago. He would go to bed for an hour or two and get up and go out and sit in his chair with the light on and I had not idea why. He would just say it felt good. He eventually stayed in bed with me calling him out on it seeming very strange. Back to normal for a couple of years but now he is waking up in the middle of the night and using his walker goes out to his lift chair. He does not always use the bathroom but just goes out to his chair and turns the lamp on and sleeps. I am giving in now as at least I can get a better sleep myself and I do need the rest. It seems that no matter what there is always someone that has it worse. Take care all of you devoted caregivers and I send hugs to all. Nancy