How does a hospice help with someone with PSP?

[Cinderella80]

Hi friends I just wanted to ask if anyone has joined a hospice and is caring for someone with PSP I would like to know how they help? What types of services do they provide? Mum doesn't want any carers she only trusts me to take care of her. I just want to know what kind of things they provide.No one has really told us anything and it's been nearly three years since I've been caring for mum on my own. I would be very grateful for your responses.Thank you.

[Hidden]

I am interested to know also for my husband.

[AliBee1 in reply to Hidden]

Hi Laurel, See my reply to Cinderella80. Good luck. AliBee

[DoingwhatIcan]

Hi there… my dad’s local hospice has been a life line of support. In the early days when he could still move he went for day activities and respite. But more importantly they provided the link to many services - the palliative care team, the district nurses, they helped us get chc funding. They also have an emergency number that we can call instead of an ambulance.

On another note, I know it’s hard but you will have to put your foot down with your mum and get some external help.., otherwise you will fall apart and be no use to anyone. My dad was the same but very quickly came round to it once the carers were in place.

But back to you question… why not contact your local hospice and just see what day activities they have… then take it from there.

Good luck…

[Kasenda]

Hi there, from my experience, the most help and support we got since my husband’s diagnosis of PSP was from the local hospice. Their physiotherapist, OT, social worker, day unit team were really efficient and helpful. Because of the hospice, we rarely need outside help which you need to wait a long time for. Also they care for the carers too. I can’t speak highly enough of them and would recommend them being your first contact after your diagnosis. Once you are under their umbrella, life is a little more bearable. You will always have support 24/7. Though like most people, we were very unsure at first because the hospice is known as ‘end of life care’. But now they become our second family in our battle against PSP.

All the very best to you.

[Poppypolo]

As with the other people hospice have been a great help to me, they help you with all the different people that need to be in your life at this sad time from helping with chc doctors etc or just with the support when you are at a loss to know what to do next.

[AliBee1]

Hi Are you in the UK or elsewhere. The Hospice Teams in the UK usually have a helpline 24 hours a day. They also have ocuupational therapists and physiotherapists who are specialised in support with what is needed and we found that we had continuity of care with them. They also have doctors highly qualified in medication and palliative care. I found their import invaluable over the last year. Hope this helps. Love AliBeePS. I totally agree with Doing What I Can about the importance of getting help.

[AJK2001]

Contact your local hospice and ask what help and support they offer. It varies but most offer a day centre, carers support group, physio, maybe alternative therapies, respite as well as palliative care and sometimes support at home.Mum wasn't keen on going to the day centre at first but tried it and loved it, there were people there who understood, she enjoyed the hand massages, the company and generally being made a bit of a fuss of.

I cannot recommend getting in outside help strongly enough. Mum was very reluctant at first but we started with just a couple of visits a week for help with showering and gradually built up as Mum's needs increased. We had some truly lovely carers and they became Mum's friends. I remember one visiting Mum after she'd left to become a nurse and the way Mum's face lit up showed me just how important and what good friends these ladies had become. Nobody likes to admit they need carers but they make such a difference, not just in the physical tasks but the mental health support too, for both the PSP sufferer and the carer.

Getting in carers is not about relinquishing responsibility for your Mum's care and at first I would be on hand to make sure the carers understand your Mum's needs and how she likes to be looked after. This should help to reassure your Mum. You are not abandoning her you are looking after yourself so you can continue to look after your Mum.

[Doublereeder]

Hi Cinderella,

Before Mum went into a care home, the hospice were great about liaising with SLT, physio and OT. Unfortunately, this was just before lockdown so she couldn't avail of any day activities. The local hospice did arrange for a telephone befriender to call her once a week. They also provided me with the advance directive paperwork so my brother and I could have a very difficult but necessary conversation with her about end of life. The hospice then ensured that the DNAR was properly signed and completed so we didn't have to worry about that.

Our hospice was also able to offer counselling both to mum and myself (separately!) which I really benefitted from.

As Doingwhatican says, you must put your foot down about external carers. I know that's easier said than done. Try the argument with your mum that they're for your benefit, which they totally are and possibly that might resonate with her love/care for you as a daughter. If this was a friend saying this to you, would you also advise the need for external care to them? Give that same advice to yourself too.

Good luck!

[Cinderella80]

Thank you friends for your responses. I am very grateful. I don't know how much they charge or are they free I don't know how it works. I will continue to care for mum as best as I can but would be very grateful for some support. Maybe with a OT physio someone to to talk to for me as well. The dementia service we have been with for nearly three years have been dreadful we don't hear from them and if you need anything I have to keep chasing then up then they apparently have meetings just to give mum a piece of equipment. I will have to chase mums gp up to do a referral if I can get a appointment which will be another hurdle.

[Abrecheisen53]

Dear Cinderella80, my husband John was in Hospice in the US for five days short of a year. It was a struggle to get him admitted into one since almost no one had ever heard of PSP. In the US it's all about what Medicare will and will not accept. We finally went to a Palliative Care doctor and she immediately placed him in Hospice. Within a day I had more durable goods than I knew what to do with. They were a godsend. John loved his CNA who came and bathed and dressed him every day (except weekends). The burse came once a week at first and then every other day at the end. Everything; ex. diapers, medications, catheter care, etc. was covered. There was music therapy, pastoral care and respite care every three months to reset my battery. They were on top of his meds for anxiety, sun downing, hallucinations, delusions, etc. At the end, they were there for whatever I needed. At the end John suffered from 'death fever' where his body spiked 108 degrees. Quite traumatic for everyone, yet they were there to help.I think people wait too long to apply. Trying to get in was very hard, like trying to fit a square peg into a round hole. Rather than asking me how many times he fell, (which I always felt indicated what type of caregiver I was) we discussed his choking, swallowing, things like that.

I can't say enough good things about getting Hospice on board. Good luck and don't take no for an answer. You are their only advocate. Wishing you strength and courage my friend. Alice

[Junky60]

Hospice was a great help to us, 24 hour physician/nurse care and advise. They helped with figuring out symptom relief. They had people who came in and gave baths. They helped me know when it was becoming to much and dangerous for us both to keep trying to move around. They also furnished equipment, drug delivery. Our local hospice care also had a respite care facility that I could use 5 days a month.They were lifesavers. And then when my husband passed away they took care of all the calls that needed to be made!

[Stephanielayell82]

I couldn't say enough good things about our local hospice. Insurance pays for it so less money to spend out of pocket for help. You've made several post about needing help as family and friends don't get how much work it is. I hope you get them sooner then later for both you and your mum. My loved one didn't want hospice either and you just have to be blunt and honest with your mum. They don't understand the amount of care they require. And the longer she controls who can help her and who can't the resistance will get more. Maybe talk your mum into meeting with hospice to explain how they can help improve her quality of life. My loved one was wanting to see doctors that didn't do anything for her because they don't know much about PSP. She has private insurance so has a deductible to reach and finally she understands that with hospice care we get 2 bed baths a week, music therpy everyother week, nurse visits weekly doctor visits every y0 days, Chaplin once a month social worker once a month so we get more for our money with hospice then any doctor ever that never has answers or help. They just may be that little help you need so your not carrying the whole load yourself. Good luck!

[Richard33]

Cinderella,You have lots of good advice above. So just contact your local hospice and explain your mum has a terminal / life limiting illness. We have been getting help from the hospice - equipment from their OT, consultations with the doctor etc - since 2017. They stress the patient does not have to be in the final stages of life. They are partly funded by the government and partly as a charity - so the service is free to you.

Hopefully they will help you with a lot of the issues regarding equipment you need etc and give you advice as a carer.

Richard

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