Hi-Dad diagnosed with PSP

[Emilysmarties34]

Hi all. Glad to have come across this forum. My dad has unfortunately been misdiagnosed- he was diagnosed with Parkisons about 4 years ago, but after a neurological scan recently and drugs not working, the diagnosis came to PSP. Found out two weeks ago so we as a family are shocked and upset.

My dad is 79, and has deteriorated very quickly in a short space of time. He is at a nursing home at the moment, in a winter bed. He needs to move soon though, and we are looking into the best home for him to be. We looked into Sue Ryder, but the room was very small and quite far for my mum to travel and visit everyday. I did have high hopes for Sue Ryder as the nurses there seem specialist skilled in nursing people with PSP, as opposed to say a normal nursing home.

I have arranged to visit a nursing home with mum, and want to meet a senior nurse to ask questions on how they will look after Dad. He needs palliative care. As you guys are aware, PSP is quite rare and I am not sure how well equipped nurses are to deal with PSP patients.

My dad currently has to do number 2 on a pad on the bed, which causes huge discomfort for him- he wants to go to the toilet and do it in comfort and dignity, but the nurses say its a three person job- due to his balance being bad. What solution is there to this?

many thanks, and I look forward to hearing from you guys.

Emily

[D0ttieL0ttie]

Hello Emily

An early diagnosis of Parkinsons is common, it is only as the disease progresses that PSP symptons will start to show. My husband at 61 was also misdiagnoses with Fronto-Temporal Dementia, not as a common misdiagnosis but no-body's fault.

There has been a lot more awareness put out there to health care specialists and so we are getting there.

Unfortunately, it is unlikely that you will find a specialist nursing home for your dad, my husband went into a nursing home for people with neurological illnesses in June last year and I simply had to use psychology and train the carers myself, for them to understand his specialist needs, like rigid core, inability to bend in the middle, gripping, falling and personal care. My husband is now in nappies (pads) but will sometimes ask for the toilet and we have a commode that we bend him into and then wheel over the toilet.

He also uses a 'Mo Riser' where he can pull himself into a standing position but there are always 2 carers supporting him.

If your dad is palliative care then most nursing homes will have skilled carers to look after him.

I wish you luck in your search, may I suggest that you try Not to overthink it.

With any nursing home you have to work with the staff and assert what you feel is best for your dad.

Take care and good luck

Pam

[Dadshelper]

Welcome to the site! Dad, CBD, was in a nursing home during his latter stage. The nusing home is handling his bowel movements in the safest way for all concerned. A hospital would be doing the same method. I spent a lot of time with the staff explaining dad's disease, they had never heard of it. Be your father's advocate and voice, keep him comfortable and safe.

Ron

[Willow_rob]

Hi Emily, I care at home for my wife who has PSP. I am fortunate in that I have tremendous support from the Community Health Team and the care company (Circle of Care) for which I have CHC funding. My wife was diagnosed in November 2017 with a 2-6 month prognosis. Maintaining as much normality and quality in my wife's life has contributed to her survival this long. Home care is extremely hard work and knowledge of PSP was limited with the carers but they learn and their compassion and company again helps maintain normality. My wife cannot communicate, is rigidly immobile but thankfully we do not believe she is in pain. She can still chuckle at the carers jokes (normally at my expense)!

I would recommend home care if you can get the support in your region but you will have to become the advocate and expert on PSP. This site has enabled me to provide this service. The very best of luck. Rob

[Emilysmarties34 in reply to Willow_rob]

Hi, thanks for this. Are you based in UK? As seen some American people on forum too.

[Willow_rob in reply to Emilysmarties34]

The UK near Exeter

[Emilysmarties34 in reply to Willow_rob]

Sounds like you have a lot of great support around you. I’d love for dad to have care at home but apparently it wouldn’t be suitable...I think some people think the easier option is a nursing home but I’m not too sure about that.. I do wonder whether dad would be better at home or in a nursing home. Does the CHC pay full fees for the care you receive?

[Willow_rob in reply to Emilysmarties34]

When CHC funding was granted the assessor stated that it would be limited to the maximum they would pay for a care home. This has been challenged and the CCG is not allowed to put a cap because the decision to grant CHC funding is based on medical need and your Dad has rights if he is competent. Now if Mary's pot runs out I could apply for more. However, in the beginning because I was physically able to manage and none of our local care companies had the capacity to upscale the number of visits quickly, I built up a reserve of funds so have not yet had to ask for more. Do also remember that your Mum will be his primary carer and has health needs herself. If you want to talk this through then message me with a contact number and I will do all I can to help. Rob

[Emilysmarties34 in reply to Willow_rob]

Ah interesting.. my dad has been awarded CHC funding, with 680 a week- but nursing home costs in the area is about 1500-1800 a week, so should CHC fund all of this? They were told they’d have to pay the rest but that’s wrong isn’t it.

It’s more of a problem of getting the suitable equipment that needs to be put in place at home, like a suitable bed, hoists, toilet needs... as dad is immobile. That’s expensive. Ok sure, il get in touch, is there anyway can private message you for your number to get in touch? Thanks

[Willow_rob in reply to Emilysmarties34]

In our area the Community Health team (occupational therapist etc) organise the infrastructure for home care (ramps, hoists, wheelchair assessment etc). Please contact me because it is important to share info and my finger is worn out on my mobile!

[Willow_rob in reply to Emilysmarties34]

It is not one service or another, they should work together (and with the voluntary sector like Hospicare and Marie Curie). Integration is the only way your Dad will get the right care and you're Mum will survive. Remember we and you can achieve a great deal as long as we don't mind who gets the credit or who bears the cost. Rob

[Emilysmarties34 in reply to Willow_rob]

I looked up circle of care and got in touch with them. They cover Bedfordshire where my parents live. Il try and see if my mum is open to having a chat with them before ruling out home care.

[Servena03]

My hubby is at roughly at the same stage, he is under hospice care, we moved into a care home where we have our own apartment, two years ago (which I pay rent for), hubby is 83 and I'm 77 his 24/7 carer, we have two carers in the morning to wash and dress him, and at night to put him to bed, our O.T supplied all medical equipment for me to handle him, I use a hoist to put him on the commode or wheelchair, (none of this we pay for) it is tiring and depleting as there is no conversation now, but we are able to have some close life together, and I feel this is keeping his sanity longer. I am also in UK, could this situation work for your dad and mum? I have also arranged with the hospice for john to be treated at home not hospital for his final days, he is no good without me by his side. I can feel for you and your family, we were told months for John too, which is very painful, good luck to you and your family, please ask for all the help you need, and keep looking on this blog you will learn more than what the medical profession can offer. Love and wishes, jean xxx

[NHGrace]

This can’t be! If you put a stable bedside commode right next his bed (preferably a bed with rails or canes attached, then surely he can stand and pivot (or you could move the commode to him). It’s not perfect, but sure beats the bed. Sorry your family is facing this. Hang in there!

[Emilysmarties34]

Hi all again, really appreciate this forum and everyone with their answers of help and advice below.

Dad is now in process of being moved from winter bed in temporary residential home to a care home nearer to my mum. That is a relief as at the moment she drives 40 minutes to see Dad and 40 minutes back home and goes every day- takes toll on her.

Dad has been in the residential home for about a month and a half now, and is rapidly losing weight... Mum says he doesn't eat much- he refuses to eat. Would he have to be forced fed or is that not allowed?? We think he is not eating as its a way out for him.

have you been in this situation before? Dad doesn't have a problem swallowing, he drinks a lot of fluid- just seems to be refusing to eat. So yes having a PEG isnt something that we've thought about as seems he does not need it. (I think he will refuse a PEG)

thanks,

Emily