thank you all for replying to my post 3 days ago. I have a question about respite. My current concern about putting my husband into a care home or hospice for respite is the stage his PSP is at. The the moment, he is about to walk short distances but has to be accompanied as he may fall or stagger. He has to have someone with him in the toilet to stop him falling and can be doubly incontinent. My worry is that a care or or the hospice will not be able to provide that one to one care, so, for his safety, they will probably put him and wheelchair. My worry is that him being in a wheelchair for two weeks will accelerate his not being able to walk and therefore accelerate the illness too, as he has fought to stay on his feet.
I’m also worried about his swallow as he can only have a puréed or liquid diet and fluids need to be thickened.
Can anyone advise? Thank you so much
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Toddet
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We currently have CHC funded care at home full days and I have been given some respite time. For this time the carers came to stay here one doing 9-9 days the other doing 9-9 nights and I went away and had a break. Could you consider something similar? There are many good care companies who specialise in this type of care or existing care company may be able to provide as ours did. Whilst there is quite a lot to do in preparation, food, clothes, meds, activities, taxis for a few outings etc it was so worth it and the opportunity to go away gave me the break I sorely needed. Whilst I wanted to travel to see family and friends, I didn't want to stay with them rather I needed my own space so I booked a small holiday cottage near my old home town. This gave me the freedom to meet up with family, lunch with friends, do a little shopping but importantly it gave me a space to relax over breakfast and in the evenings doing just doing what I wanted and needed. The usually carers looked after my husband and took great care of him and provided the much needed the 121 care and attention you speak of and I think it gave him a good break from me Non of this is cheap I know if your paying for care but care at home is unlikely to be more expensive than residential and your husband will get the tailored support he needs
Good luck. Read everything on here about chc, use the search bar and you'll find many relevant useful posts. Also Google chc, look at both beacon and care to verify different sites and the pspa has a good document showing how psp symptoms link to the chc criteria. Xx
I understand your concerns. A mobile PSP patient - especially with elements of impulsivity - perhaps also frequent trips to the toilet - could be very difficult to care for properly in an institution. I believe respite care would need to be arranged in accordance with your husbands care needs. If those needs are best met with 1-on-1 supervision and assistance in the home, 24/7, then that is what should be provided.
The fact that your husband still has mobility is an important factor - also for the CHC funding.
The specific nature of supervision and support my husband required was similar and because of this we asked for a personal health budget so that the overall package could be personalised for him.
It is important to document the nature of interventions that are needed - it may be very useful to record hour-by-hour for at least 24 hours (or up to 72 hours) exactly what the patient does or needs, what health risks are involved, and what the care giver does to help. It is the best way to illustrate the “intensity and unpredictability” of the needs.
I've been reading, and trying to assimilate all that I can find about CHC funding. One kind person sent me information regarding an appeal after initially being refused funding.
As it seems rather difficult to get the funding, I still have no idea at what stage of the illness or level of care one would need, before applying.
For now my husband is able to do limited walking indoors with the aid of a walker, but in a wheelchair outdoors. He can still swallow all food without choking.
I’m not sure if it depends on area but I think CHC is quite hard to get. Our Parkinson’s nurse helped fill an application in in June and I never heard anymore.
Now mum’s condition has declined (she also has dementia now and whilst less mobile/impulsive needs constant care). She’s much more rigid and we’ve started thickening drinks. Her Parkinson’s nurse has contacted the palliative care team the local council needs assessor has gotten one of her colleagues booked to come and do another CHC application - she says her colleague is very experienced at filling them in. The cynic in me think the local council is keen to have the NHS take over the costs.
It gets very confusing with so many departments involved but hopefully we’ll end up with the best home-based care for mum as can be.
Regarding a care home for respite, what we had for 2 weeks last year didn’t give 1:1 but as they had staff generally available they were able to help with toileting as needed and they put pressure alarms on her chair so they’d be alerted to her standing (she was still quite impulsive then). She did have a few minor falls but no more than she would have had at home at that time - often night time onto the crash mat.
Thank you so much for your reply - I don’t know where you are based, but CHC funding is hard to get here (Sussex) so I’m going to start that journey next week. Take care and go gently x
I agree with Millidog. If you can get 24/7 care at home then it would be the best you could do and would provide you with peace of mind. My husband has had a couple of respite stays in nursing homes and none has been plain sailing . The most recent was worst of all. They showed no interest in meeting his particular needs and left him alone for long periods - he came home distressed and with a chest infection because he had been aspirating when left unattended. He was ringing me all the time because he couldn’t summon help (can’t press a buzzer) and I had to phone the home to tell them he needed attention. Absolutely ridiculous! He is CHC funded and it has now been agreed that in future any respite for me will be provided via 24/7 care at home.
Thank you so much - as you say these illnesses are not understood at all. Home care is obviously the way to go. I am going to start the journey of trying to get CHC funding - very hard in this area. So wish me luck! Take care and go gently x
I’m a PSP sufferer and have similar issues. I can speak from experience that respite care in my local hospice was great. I admit to being there only for a week, not two, but I didn’t go backwards. In addition, I find it difficult to speak so my husband talked through all my needs with one person, but the message must have been committed to paper as all who came to help knew what was needed. Hope this helps
bless you 🙏 I don’t have a lot to add as the advice above is coming from experience.
My poor dad is in advanced stages of CBD - he has carers at home via fast track / we have an CHC assessment coming up. Neither me nor my brother thought he would get past Xmas 23 let alone 24. It’s a dreadful disease.
We have a local hospice called Queens Court who have been simply incredible - they offer day sitting services and fully understand dad’s condition / needs as they have a palliative team. They are a charity maybe you have something like this locally? Amazing people
My mum has cared for dad for 5 yrs - I’ve got nothing but admiration for her and anyone in that position. Primary carers are truly amazing and need support. First and foremost my mum is a devoted wife, mum and grandmother and I wish she could step back from her 24/7 caring role as she has suffered significantly due to the stress.
Dad was fast track CHC April 23 after coming out of hospital where his condition rapidly deteriorated, he became bed bound and lost capability to do anything for him self.
I hope you can get some time for yourself. I reflect on my mums journey and she has refused to put dad into respite for exactly the same reasons. I don’t think it would have been any different in hindsight as she wouldn’t accept the options even though they are available however CHC, local hospice have been a godsend.
Many thanks for your reply. These are really cruel illnesses. I feel for your Mum as she must be tired - but she must be so grateful for your support. Take care and go gently xx
Totally understand your concerns, my Dad spent a couple of weeks in residential care when l was having our twins and it was actually more stressful for me as l knew he was at risk.
PSP is misunderstood everywhere and it takes time for carers to understand the individual’s needs and behaviour patterns .
We ended up replacing agency care with one self employed carer who was fantastic. We did this through social services (as no CHC despite high needs and constant supervision) . This meant Dad had someone who did fully understand him,
Our carer stayed at home with my Dad whilst we had a few trips away using the respite money to top up her hours. This also meant he didn’t have the disruption of being relocated.
We took my Dad on a family holiday one year, his carer came and stayed with him for the end of the week whilst we had a few days by ourselves.
My Dad passed away last year. l am forever grateful to his carer, his quality of life and ours was much improved once we got his care and respite in place.
I did look into the hospice for respite as it was mentioned to me by a doctor but they weren’t able to help.
Hope you can get something in place, respite is really important for both of you.
Many thanks for your reply. I am so sorry for your loss. PSP is a cruel illness and we do whatever we can do to improve the quality of life for our loved ones. Take care and I hope you had a lovely Xmas with your twins x
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Non of this is cheap I know if your paying for care but care at home is unlikely to be more expensive than residential and your husband will get the tailored support he needs
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