Restless nights: I have been reading the... - PSP Association

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Restless nights

DoreenC profile image
25 Replies

I have been reading the posts of all you lovely people for several months now. My mum is 82 and my dad of 84 has looked after her for at least five hard years. Following bowel surgery he has had to admit defeat and my lovely mum is now in care. We all worry as we know how bad she was at home during the night. Sleeping for very short periods and wanting to get out of bed and generally being very agitated and restless. She cannot stand, walk or get out of bed unaided. Not surprisingly she fell from the bed at the weekend and ended up in A & E. Fortunately no bad injuries only a bruised face. Does anyone know of anything that could make her less agitated at night and help her sleep. It is very difficult for her to explain her own behaviour she just says she doesn't know!!!!!

Any suggestions would be appreciated xx

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DoreenC profile image
DoreenC
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25 Replies
jzygirl profile image
jzygirl

My Brian is in a hospital bed with cot sides so he can't get out of bed. I have found having a night light on and i leave the radio on it seems to keeps him settled. We have radio 4 or radio 4 extra on because it has stories during the night. He says he feels less isolated because he can hear someone talking and it's not pitch dark so less scarey.

Janexx

DoreenC profile image
DoreenC in reply to jzygirl

Thanks Jane.care home don't allow cot sides as mum can still pull herself up and they can be more dangerous. Also I don't think that would help with the agitation. She has a night light but the radio might help. She is hard of hearing though so would probably keep the whole place awake with it. So difficult worrying about her each night.

easterncedar profile image
easterncedar

One doctor recommended Amitriptyline for sleep. It is an antidepressant, sold as Elavil, and mustn't be used with selegiline, which my guy is on, so we haven't tried it.

DoreenC profile image
DoreenC in reply to easterncedar

I think the medication is something we could discuss with the doctor. Definitely need to try something

abirke profile image
abirke

I'm not sure this matters, but does she have PSP. other neurological disorders may perform differently than that of PSP though agitation is one of the symptoms. B listens to automated books in the day. and uses sleeping aids at night. Also, she may benefit from some form of assisted exercise ! Sleepy Time tea works wonders for me!!!

AVB

easterncedar profile image
easterncedar in reply to abirke

Love sleepy time, and valerian capsules also work. Forget valerian tea, it tastes like teen boy gym socks.

abirke profile image
abirke in reply to easterncedar

hahahah sounds like one stinky tastin' tea. ...I think I've had that....B has to have diphenhydramine even with his prescribed drug...It gets him there..to sleep... other stuff keeps him there.

AVB

Heady profile image
Heady in reply to easterncedar

Do we dare to ask, how you know what teen boy gym socks taste like?

This is a story, I can't wait to hear!!!

Lots of love

Heady

easterncedar profile image
easterncedar in reply to Heady

I should have said the tea tastes like the socks smell. and you know you never have to get very close to find THAT out.

Heady profile image
Heady in reply to easterncedar

Yeah, I had one!!!! Nose yet to recover, he is 41 now.

Lots of love

Heady

easterncedar profile image
easterncedar in reply to Heady

Ha!

jillannf6 profile image
jillannf6 in reply to Heady

HII ALL

BACK WITH MY KEUBOD FIXED AT LAST OS AM TRYIGN TO SNE DYOU AN EMAIL

BUT FAILED TO DO SO SO I SHALL REA D ALL YOUR POSTS AND REPLY AGIAN

LOL JILL

Heady profile image
Heady in reply to jillannf6

Hi Jill, nice to have you back! My wi-if has been playing up for a month now. Thankfully fixed yesterday. It's been terrible, not having easy access to this page. I was going days without any luck, logging in! You don't realise how much life is on the net now, until you lose it. It's quite frightening how much we rely on our damned computers! As for not being able to talk to everyone on here regularly, well that has made life pretty hard!!!

Hope all is well with you.

Lots of love

Heady

easterncedar profile image
easterncedar in reply to jillannf6

Hi, Jill! so nice to see your name pop up on my notifications! How are you doing these days? I worry when I see reports of more rain for you all. The flooding has been appalling. I hope you and yours are all safe and dry.

We have had a warm and rainy winter here, finally just got some snow and cold, which I for one will not be complaining about! For one thing, the ticks have enjoyed the extra long season. They've been moving northward along with global warming here, and this past year their population exploded, and it was an awful battle to keep them at bay. I tend to be soppy about all living things, but I make an exception for ticks!

Anyway, good to see you, Jill! And really, I'd be glad for news! Love, Ec

jillannf6 profile image
jillannf6 in reply to easterncedar

HI EC

IM BACK ONLIEN AGAIN AFTERMUY KEYBD WAs giVIIGN ME PROBS AGIAN AND I NOWHAVE A NEW ONE SO WE SHALL SEE....

HA V EMY MOSUE WORKING SO COUDL ONLHY LIKE WJAT U WER E ALL PSOTING

HAVE AJD A MAJOR PROBN IWHT FARITGN/ NBREKAIGN WIND/TRIJU,PIGN )WHATEFVE RU WANT OT CALL IT ) DAUTIEM AND NIGHT TIME - I T REI DTO PSOT A QUESITON ANOTU IT BUT KEPT LSOIGN IT SO I GAVE UP NUT SONEONE ONTHE SIT EM AY HAV EAHD EXPERIENCE OF IT]

NO REAL NEWS

APART FM SOME WEEK LONG BREAKS PALNNE D FOR WHEN TH E WARME RWEAHTER COMES `9SL FFACATEIRIMG FPRPTHJE DISABLD

IT IS A TLAS TFROSTY HER E AFT RA V MILD DEC ADN JANUARY SO FAR BUT THE CAT HAS BEEEN ABLE TO GO OUT TO DO HIS BUSINESS`FOR A FE W MINS EACH EVEINGING

LOL JILL

PS PLZDEXCUSE THE TYPOS

easterncedar profile image
easterncedar in reply to jillannf6

Hi, Jill! Glad to see your messages, always. Don't worry about the typos. We can read through them. Now that you mention it, the wind is rather dire here, too. I thought it was just nature and him, as I couldn't link it to his diet. Psp interferes with everything. Maybe we can blame it for this, too. I'd be glad if anyone had any ideas about dealing with it!

We are having another grand snowstorm here this morning, and I'm right now lying in my cozy bed looking out the window at it coming down. The field is well blanketed from the two storms we had this past week. The trees along its edge seem to stand in a mist, only the first rank visible.

I guess I will get up and get a fire going, make some coffee. Nothing to do today but a little tidying and relaxing. Maybe bake some bread. Watch the snow pile up. I'll have to shovel us out tomorrow to go back to town, but that's for then.

Be well, Jill. No falling. Love, ec

jillannf6 profile image
jillannf6 in reply to easterncedar

GODO 4 U EC

I A-PRAEICIATE WHAT A PLONG IWNTE R IT CNA BE IN THE EAS T COAS TOF THJE USA & GUESSS Y0U ARE GLd==AD IN A WAY HTAT IT HA S COOM E LATER HTIS YEAR (IS THSI HTE CASE_]_

;LOL JILL

easterncedar profile image
easterncedar in reply to jillannf6

Yes, although the warm December was disturbing, there was a silver lining or two, easier mobility one of them, cheaper heat another! I like having snow to play in, but it's very hard, maybe impossible, to leave him alone at all these days, so going out for a bit of a ski may not be something I can do anyway. The snow is very pretty, at least!

Esra profile image
Esra

Hi,

Regret, my mom has the same problem.

Our neurlogist recommended us some medications which help her problem. One of them was Remeron(30 mg) My mom started taking quarter of it before appx one and half hour before sleeping. After 20 days, we needed to increase dosage of Remeron. She took half of it. After taking it nearly 3-4 mnths. Then she had some side effect of it. Recently, she has been taking Lexotani( quarter of it) and melatonin ( 2 pills). Melatonin has very very side effect. Thus, we do not need to incerease lexotanil dosage. As you know each medication has min or max side effect.

Or seraquel helps also .

God bless your mom and you

Esra

Amilazy profile image
Amilazy

Besides the above medications one that works for my wife is Lorazepam 1mg prescribed by GP at half tablet but we use full tablet. It reduces anxiety and allows for a short sleep 3-5 hrs so does not affect incontenance. Allows M to relax even if she does not sleep. No after affects or side effects.

M has a hospital bed with rails when she tried climbing out last time over 6 months ago used an old mattress in case she managed the climb.

Best wishes Tim

NannaB profile image
NannaB

This is a difficult one. I hope you can find medication that helps. We never did. My husband fell frequently but being at home I rigged up all sorts of warning devices. Unfortunately care homes can only do certain things. They can put pressure pads on the floor so as soon as your mum steps on it, it sets off an alarm. There are also some that you can keep in the bed so the alarm goes off if she starts to get up. The problem is getting to her before she falls. Our problem wasn't solved until C could no longer physically get out of bed or up from a chair.

X

Robmatlol profile image
Robmatlol

Hi Doreen C,

My mum's neurologist prescribed Mirtazipine which she takes at bedtime. It's an anti anxiety antidepressant and I do think it helps. It seems that night time anxiety is typical of psp sufferers. It's a horrid condition. Good luck with your mum,

Michele x

DoreenC profile image
DoreenC

We have now got an appointment with the neurologist. Hopefully he will prescribe something. Thank you everyone x

jillannf6 profile image
jillannf6 in reply to DoreenC

I HAV ES EEN A PSYCHUATRIST FOR AMNH YRS COS OF A NXIET FDEPRESSION AMD TAKE A COCKTAIL OF DRUGS 4 IT AT NIGHT TIME.ITAKE REGBALIN AND TRAZADONE BOTH OF]WHJCI HELP

LOL `JILL

jillannf6 profile image
jillannf6 in reply to jillannf6

sorry about the typos above

anxiety and depression ARE BOTH PROSB For me but i did well on VENLAFAXINE *for 12 years and nowDULOXETINE AN anti depressant and preGABALIN WHICH HELPS WITHE tHTE ANXIETY (PLSU Trazadone whichc i take at night time_)\

if this is of any help plz let me know

it can b a case of trial and error gettign the dose right \

lol Jill

xxxxx

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