PSP - how to meet rapidly changing needs - PSP Association

PSP Association

7,033 members9,593 posts

PSP - how to meet rapidly changing needs

Halftimeoranges
Halftimeoranges

My dad has been diagnosed with PSP about 2 years ago. He has sadly declined very rapidly and has had numerous falls over last 2 years. He is now wheelchair bound mostly but latest accident has left him with very little mobility which has meant its now just too much for my mum to do this by herself. His cognitive ability is declining to which means he can’t assess his own risks and tries to stand which means he falls a lot. It’s a very painful disease to watch.

Does anyone have advice on how to stay ahead of what’s needed? We always seem to be 5 steps behind what he requires and are now looking into carers (Kent based). Any advice on experiences is much appreciated or where we should first turn to for help. Social services have just been in contact but I don’t know what we can get from them, we’ve had 2 OTs (nhs and social services) physio therapists (but no appt yet). It seems to be a mind field!

14 Replies
oldestnewest

Hi halftimeoranges

Sorry to hear your dad is declining fast

When Archie tried to get up see them about telecare it’s a pad that goes on the chair and on his bed it alerts you if he’s trying to get up Also just keep ringing and pestering them cause you need things in place for your dad

You could also get the community Matron involved the one we had was brilliant and she always helped along the way

Get a carers assessment too for your mum for the help your mum will need .dont be afraid to speak your mind about things cause sometimes I think they try to do a deaf ear on people

Things that you should be able to get are grab rails where needed inside and out

A rise and reclining chair a profiling bed a closimat toilet which cleans and drys him

I won’t overload you but these are things you might need at a later date but you can throw it at them anyway

Also if it’s a problem going to drs they should come to him now he should be in the 2 percent bracket where once you ring there has to be a dr to ring back same day and any hospital appointments transport has to be given

Hope you get what you need and always come on here there’s plenty who can also help you

Take care

Sue xx

Thank you Sue for your reply. I will certainly look into the toilet and alarm pads plus good to know about Drs as it’s unsafe for my mum to get him in and out of the car now. As my mum was a trained nurse she has been coping beyond maybe what other people could do - but the last accident has been a big step change.

Accepting that she can no longer care for dad by herself is a difficult journey for her - and when faced with loads of phone numbers to ring etc and wade through the paperwork by yourself as well as now be in charge of the everyday matters - she will put it all off for another day.

Hence we are all trying to help and make decisions quicker for dads safety. It seems quite a lot of people are now involved - an electrical bed has just been ordered but it Just always seems to be after a step change and never before. I guess that’s the difficulty with these unpredictable- case by case diseases.

Thank you for your advice xx

Hi

I agree every time Archie went into hospital he always came out with something else that was taken away from him and unfortunately they didn’t know about psp I took the decision last September he wouldn’t go back into hospital as everything was at home for him even emergency meds for chest infections and uti they tried to put him in a n/h for a while my words was you go do one

Unfortunately I have my own health issues so we got good help but if your mum is struggling also get dr on board cause they can put there 2 pence in too

Please don’t let them say we will look into it tell them you need it now not next year

Good luck

Sue xx

Thank you for your tips. Sorry to hear about Archie - it sounds like you are having a tough time too. Look after yourself. I am now getting ready to visit Dad for a few days. I'll even watch the football if I have to!

Np problem everybody is always about to help

Unfortunately Archie passed away5 weeks ago but I’m always nosey on this site

Hope your few days goes well with your dad

Take care

Sue xx

Yes. That is the problem.

I also realised that because I am a " coper " you will be left to cope. She needs to be assertive in demanding quickly - they don't want him to go into hospital.

We learn to toughen up !!!!

Jean xx

Has she asked Dr to contact hospice for daycare, they were a life saver for us and helped to guide us through the CHC process to get full funding for his care. Ben went once a week to the daycare centre and they cared for him really well. I had counselling there to help me come to terms with Bens diagnosis, Ben refused counselling, but it was offered to him too. They also did home visits when he became to ill to attend daycare. The Speech and Language Thereapist was also invaluable to help with onset of symptoms along the way and referred us on to other agencies ( e.g. Physiotherapist, Communications Specialists) I always pressed for the equipment I knew I would need as Bens condition worsened. Bens Neurologist wasn't very helpful, although he did at least spot he probably had PSP on his Ben's first visit so I guess that's something. Once the OT,s were onboard I would contact them f I was finding things difficult and they would visit to assess and suggest what equipment would be useful to help, I tried anything they suggested but it wasn't always successful, 90% of the time it was, surprising what is out there to make things a bit easier for your Mum. Having carers in to help ease the load is vital and eventually he will need two carers at a time for safety reasons. Has your mum had adaptations made to the house, e.g. Wetroom. It's a massive step and can be arranged through the OT if you aren't able to fund yourself, they can also arrange lift installations to get him upstairs if the house is suitable. The list goes on but the archives of this site has lots of valuable information and advice, the best place to look in my estimation.

Hope that helps

Love Kate xxx

Hi Kate

Sorry to hear about Ben and his journey with PSP.

We've been coping on our own (Mum mainly) until his fall 3 weeks ago. Now its 2 carers twice a day, and he was at a hospice as an outpatient once a week but he can't go at the moment as he was a bit dazed and confused after the fall (head first onto tiled floor).

We aren't even claiming Attendance Allowance - so will be filling in lots of forms over next couple of days. By CHC do you mean Continuity of Care? Not sure if this will be covered on another thread, as I'm all new to this. But I will be investigating.

We have loads of adaptations to the house - most of which he can't use now. We have a zara steady, and soon an electrical bed. OT's are very helpful. Hospice great although didn't think that maybe they could help with form filling - again another avenue of enquiry.

I think mum could do with counselling - which I will approach - as I can hear in her voice how overwhelming it is. She is tired from constantly getting up in the night-time plus as a nurse she actually diagnosed PSP before the consultant did - so she has known what the condition is about.

Now its time to get whats needed for both of them as Mum is worn out.

Many thanks for your help.

I would really recommend counselling at the hospice for your mother. I found it so useful at that stage to have a safe place to express my grief and pain.

xx

Hi Hafttimeoranges!

I regret that PSP has reached your family.

By private internal mail I send you our experiences with PSP-RS hoping they can be useful.

Hug and courage.

Luis

Hi

If you can be referred to a hospice they can usually supply all you need from bed to chair to turning and lifting equipment, also some rest from each other in respite or daycare, out hospice has done so much more for us than socialsrrvices

Good luck

Love and hugs xx

Hello.

This is my first time posting in this site but after reading your story I thought I should. Your situation is so similar to mine. My dad has had psp for a year and it is been such a rapid decline. I just wanted to know that you are not alone. This site helps me because I know people are out there going through the same things I am. It is such a difficult disease because not a lot of people understand it. It is difficult to watch and I worry about my dad all the time. I also worry about my mom she has dementia and has her good days and bad days. She has to live with my dad, I don’t live there so I do stuff for h and get to leave and have a break. She doesn’t. I am trying to get him services, but it is not easy and it’s a full time job. This is on top of my full time job, my three young kids, all the bills (I have to pay mine, my parents, a business my parents own). Now work is giving me a hard time for taking time off under FMLA. Ugggg. I don’t know if you ever feel this way but I have a hard time being happy and enjoying life knowing that he is struggling. Sometimes I just feel so alone. My husband is a huge help and does a lot for my dad too which I am greatful for. (I’m and only child so if I didn’t have him I don’t know what I would do)

I just wanted to know I am out here too and I understand. Even if it is across the pond. 😃

-Amanda

Kevin_1
Kevin_1 in reply to Zebbby2018

Hi Amanda

I've only just seen this post.

You sound amazing, but facing so much.

Strength to you!

Wishing you all the best on this difficult road.

Kevin

With regard form filling would Age UK be able to help? They helped Mum with Attendence Allowance forms & have the experience to know how to word things to meet the "criteria". Is your Mum claiming Carers Allowance?

I agree with the suggestion of getting the Community Matron on board, ours is an absolute boon, she sees Mum at least monthly (weekly or more often if needed) and will organise and do things that if we had to go through the Doctor's would take much longer and would also mean trying to get Mum to the Doctor's, which is stressful for Mum & I - getting in & out the car, trying to find somewhere to park, and the difficulty of manoeuvring a wheelchair round the practice with so many doors, narrow corridors and no space in the waiting room to "park" a wheelchair, we both get back exhausted, so our CM is worth her wait in gold, she listens, she's compassionate and she gets on & does things.

You may also like...