cannot settle

[Gildalily2]

My husband cannot settle. However tired he is he has to get up and walk around with his frame then sit down then up again and this goes on for ages. It’s 2am and he’s still doing it. Got him to bed by 11pm, he slept for about an hour then that was it. Twice needed to urinate but couldn’t so he wouldn’t go back to bed and we came downstairs and here we are. This has been going on for at least the past two weeks and I’m exhausted. Anyone else suffering the same?

[carehope]

Dear Gildalily2 , Insomnia and restlessness which can also be related to anxiety can be helped by certain medications . Use the "Search" option at the top of this site and you'll find ideas from other caregivers and people with PSP who have dealt with or are dealing with the issues you and your husband are trying to cope with along with suggestions of solutions .

A physician experienced in helping people who have neurodegenerative illnesses should be enlisted to assist in helping with symptoms that are affecting your husband's and by extension , your quality of life .

Take advantage of any and all assistance. Doctor input can make a really positive difference !

Best of luck to you and your husband ! ( Plus there's always helpful input through the PSP Association representatives ) Instructions for that can also be found on the site.

Elise in NY , USA

[Gildalily2 in reply to carehope]

Thank you Elise. It feels good that there is someone who is listening. I will search for and take help from wherever I can. One again thank you 🙏🏻

[carehope in reply to Gildalily2]

Hi again Gildalily2 ! ☺️ I hope that my reply didn't make our roles as "caregivers" sound easy because it IS really demanding and I doubt if there's anyone here who hasn't felt as if their sanity was questionable at times ! Typically we're all constantly trying to find answers to challenges on a daily basis , which as you said regarding your husband's present inability to relax , is just exhausting ! Don't be shy about making your needs known ! I wish that I could be of more help but our health care system in the U.S. is totally different than the NHS . It has seemed to me over the years that I've been taking care of my sister , that there is much more effective assistance available in GB than there is here. And I know that there are people in GB who have posted valuable info on this site and have a wealth of experience on how to access valuable help there ! Lots of love and best wishes to you and your husband ❣️❣️ Elise

[Bergenser]

We have had nights like that, so I fully appreciate how exhausting and frustrating it is, and how impossible it is to get any rest while it's going on. On one occasion I tried to go back to bed while my husband was sitting in his riser recliner - but I had to intervene when he went to the fridge and found some cherries to eat - I couldn't rest knowing those cherries had pips in them 🍒🍒I don't know any definite answers and I recall several posts on this forum with similar stories.

There could be medications that might help. Check if there is any medication that can help him relax. Similarly it may be that any medication he is taking is contributing to the restlessness. My husband's sleep pattern has been better since he started Tamsulosin (for the nocturia), and even better since he reduced his evening dose of co-careldopa. Still even the smallest change in routine can ruin his sleep pattern, and we've had recent incidents where he's got out of bed and fallen over while trying not to wake me up.

Try to create the best possible conditions for sleep. Practical adjustments like a quiet fan and a cooling blanket/cool pillow can be helpful as we head into the lighter and warmer parts of the year.

Hopefully it's just a phase, please be kind to yourself and take your rest when you can. I've just had carers doing a waking night shift so I could sleep undisturbed - it was a difficult thing to accept and I'm glad to have the house to ourselves again... Still the next night he slept all the way though! I wish you all the best 🌻🫂

[LFG3]

Hello,

I'm from the US. My husband had PSP. We used Trazadone a prescription before bed and it worked very well. Also a very cool bedroom, plus a fan for white noise and a weighted blanket might help. Ear plugs if he is a light sleeper and woken up easily by noise. Hope this helps. As a caregiver, your sleep is so vital. Be sure to tell him that. I told my husband that I can't be up all night and then care for you the next day, so you must stay in bed even if you are awake to let me sleep.

He had all of his faculties until the very end, so he understood this. Not all PSP patients have that.

[LuisRodicioRodicio]

Hi Gildalily2!!

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

Article in Karger Medical (Neurological Improvement with Medical Cannabis in a Progressive Supranuclear Palsy Patient: Severe impairment of motor and language functions_A Case Report) :

karger.com/Article/FullText...

“Zerachiel” Point out: “It may be worth looking into the drugs the patient is on at the moment, Amantadine for example can cause problems with sleep.

Hug and luck.

Luis

[Newstead1]

yes my husband has PSP and is exactly the same. He cannot settle anywhere and keeps going to the loo. He consequently keeps falling a lot and is covered in cuts and bruises. I have a heart condition and also find it exhausting so he’s going into a nursing home for a month with a view to it being permanent if he like it. It’s very expensive but I don’t know what else to do. All the best.