my husband was diagnosed with PSP late January ...back in 2019 he was thought to have Parkinson’s.. after a fall ...dr...ambulance ect his GP was involved and saw neurologist again and PSP diagnosed. Since he has been diagnosed he’s a several falls .. and admitted to hosp. Once for a week, was let home ..one day was back AE with Dilerium .. and infection.. since been in hosp 4 weeks .. dr rang re discharge ..talking about nursing home.. 24/7 care.. when I said would be willing to have home with palative care...I was told ooo he’s not down for that...as not ends of life.. I mentioned I’d looked on line and it sounded to me like his illness was suitable ..they want a meeting to discuss future care... I’m thinking they are more social services Carers.. but I’m wanting a more professional .... one minute telling me 24/7 care needed ... then not suitable for palative.. I’m confused ... Iv lost count of the times I’ve explained PSP to ppl. Even Nurses and Dr.
PSP hElp advice : my husband was diagnosed... - PSP Association
PSP hElp advice
hey Tubbybru, a quick word. I’m sorry for your troubles. This situation is tough. Are you in the US? Palliative care shouldn’t be restricted, and you should be able to access services. Don t give up! Contact your state’s agency on aging and the Alzheimer’s association. I should say that home care is a hard gig. You might want to explore other options. More later. Hang on. We are rooting for you.
Are you in the UK? If so 24/7 care can mean nursing care and not palliative care - it really depends on what profession you speak too.
The hospice Mum is under says palliative care, as whilst she is not end of life she is incurable. But the consultant will say care and social care define on the level of care needed and if constant supervision is needed.
If you haven’t been referred yet, I’d suggest reaching out to your local hospice to see if they can offer any support or guidance on what to do and potentially asking for a social services assessment. SS will do a financial assessment as well if they think a care home is required as if there is money over a certain threshold there will be the expectation that some or all the costs are paid.
Maybe also speak to the PSPA Charity if you are in the UK they maybe able to offer some guidance.
if in the UK definitely recommend contacting PSP association. My mum was diagnosed August 2021 and by December that year we’d gone through carers four times a day , then a full time live in carer then two live in carers before moving her into nursing care 24/7 as her mobility had declined and other symptoms of PSP meant carers (social care) weren’t suitable despite being provided with specialist equipment eg hospital bed, commodes, riser chair etc. We are self funders. Our neurologist was helpful as was the consultant. Each persons journey will be different but all will be hard. Good luck and keep reaching out to support available from here and other places.
Ask the Neurology Social Worker to refer you to the CHC team of the NHS. That is Continuing Health Care Team. They will do an assessment and both advise and eventually ,after a few hoops jumped through, pay for all the help you need. They can deal with home care and/or nursing home care depending on need. PSPA can give you more info on the process.
I AM IN THE US & IT IS MY UNDERSTANDING THERE ARE MANY DIFFERENT AIDS DEPENDING WHICH COUNTRY YOU ARE IN. Luckily there are many folks on the site from other countries to help share important information. PSP is a puzzle and too many professionals have never heard of it. SENDING HUGS... GRANNI B
Home with palliative care arrangements doesn't quite address the constant supervision he would need for risk of falls, the frequent help getting to the toilet, the night care, increasing needs such as feeding. It is a lot unless you have a lot of energy or get caregiving help. It's always hard to tell prognosis, especially if he is prone to infections and traumatic falls, but he may have quite a few years left if he's still walking and talking, eating by himself and maintaining weight.
he’s not mobile...he tries when he rolls himself off the floor level drop bed...onto crash mats. He sort of crawls tries to get to something to pull himself up..I can’t tell you how many times a day he’s on the crash mat..not fallen.. I’m so lucky I have my son who has come to stay to help me..as no way I could get him on the bed.. the Carers are not allowed to lift him.
If I rang ambulance ..he’d be on mats for hours..plus soon as they left he would roll himself off bed again!! To add to it he won’t keep his pads on..continues to pull off.. and pj bottoms.. to look at him you would think no way he manage.. he’s lost so much weight.. but still strong upper body.. he’s getting more and more aggressive ..frustration ect.. the meds he’s on don’t seem to be helping much.
I’m going to speak to GP ..palative nurses to see if dose is not enough.. I don’t want him zoned out but feel we all need the sleep. At the moment it 24/7 never on his own.. they say he can’t have a bed rail as risk....but way he’s in out bed I’d say more risk... he’s eating well...drinking.. he’s been home two weeks now and we felt we were doing well....until few days ago when he started getting more determined..pads off...out bed.. continuous ... 😰
you sound like you are at your wits end, hopefully clinical help will be there for you in some way soon keep your chin up xx
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