Hi All,

There seems to be the incorrect assumption about Hospices by some people. I'm not an authority on them, just a convert! S only started going to our local one, a couple of weeks ago. He goes one day a week. They pick him up and most of the time I collect, but they would bring him home if I want.

I was told about the service by another PSP carer. Personally, I think S should have started six months ago, to get the most out of it. So it's not something that should be thought of later! The one S goes to, knows all about PSP and they are going to talk him about the condition and what it means to him. Fancy that, someone who cares what the patient might be thinking!!! Yes, most have cancer, but it's run for anyone with a terminal illness, which includes PSP, just because it's not a quick, like Cancer, it is still classed as terminal, because you can't be cured!

Its a bit difficult for me to tell about his day, as Christmas as meant, short days, Christmas lunch and carols etc.! I know that they have a doctor that talks to everyone. S had a tumble minutes before the driver collected him on his first visit. I phoned to tell the nurses, so they got the doctor to check him out. Now going to monitor his blood pressure, as they were concerned it was on the low side. Might explain all the recent falls. They have talks about all aspects of people's illnesses and the problems it causes, there is a chance for massage and various other things. Of course, there is painting etc., to join in with if you want. Mostly, S just sits, taking in a different environment and listening to different people talking and he is away from me for a few hours.

For me, they are very helpful to carers. They are going to send me on a course for carers. Teaching how to lift, care, talking about the problems of caring etc.etc. Every time I go in, the nurse who looks after S, comes across to make sure I am OK, with no problems. just having somebody asking me if I'm fine, is a huge help. At long last, there is someone out there who knows I exist and cares!!! Also, I know for the next 12 weeks, I have the day to myself. I can plan a day for myself or not, what ever I choose!!! It's quite liberating, I can tell you!!!!

I don't know if this service is available for people with advanced PSP, which I why I have posted, because there are a lot of you out there, that would benefit from the hospice service NOW!!! I asked our GP to refer S, he whispered to me that they were only for terminally ill cancer patients, so you may have to fight your doctor. Or go direct to the hospice.

When I first heard the word Hospice, my immediate thoughts were dying people and S was not dying!!! Now I know Hospice means caring people who know what they are doing and are there to help me and S! (And we all need that!)

So please don't let the word frighten you, find out about your local one today, before it's too late for your loved one to benefit from them!

Lots of love


18 Replies


  • Brian will start attending the hospice one day a week starting on the 27th of January and they call it respite and reablement. So will have Tuesday's to myself. Janexx

  • Jane, relax and enjoy your Tuesdays. Please don't use it doing housework and boring stuff (unless you are one of those amazing people who like housework). I go out to lunch every Friday, sometimes with friends but sometimes alone. It is so nice not to cook, and Colin gets a cooked meal at the hospice. No cooking, washing up, my meal is hot and I can eat it uninterrupted. Bliss.


  • Hello Jane, knowing you live quite close to my parents, I hope you don't mind me asking but is Brian going to St Helena hospice? I rang them a couple of months ago in relation to my Dad and cried so much after speaking to them as I felt it was the first time I had spoken to anyone who truly understood. They were hugely helpful and sympathetic on the phone. I am planning to visit during Jan to see for myself before daring to mention their services to my parents. I know they will hugely resist but I might just have to frogmarch them down if I feel it will benefit us all which I know it will. Really happy for you that you will get a day off. Wishing you all the best, Nicky x

  • Hi Nicky, if your local one is like ours, they are brilliant. All the staff wear nurses uniforms, I'm sure most of them are qualified. They are very happy, relaxed places and they look after their patients. It is NOT a waiting room, by any stretch of imagination. We have just come back from our GP. Got called in, because he had received a letter from the Hospice, concerned about S taking Warfarin! Not the best drug for a PSP sufferer! S's consultant has never queried it at all. Also, they would make sure your Mum is coping. I get asked every time, if I'm alright, with no problems. Again, that's more than the GP or the consultant have done! I really hope you don't have to do any frog marching, such a waste of energy, that could be used to fight the people who don't care, not the ones that do!!!

    Best of luck

    Lots of love


  • Hi Heady, thank you very much for your response and original post. It's taken a long time for the penny to drop for me that the hospice is the best place to go for co-ordinated help. Reading 1 of NannaB's posts made me realise that this is worth trying as I was just feeling so frustrated that dealing with GP/social services/neurologist wasn't getting me anywhere as they weren't talking to each other. I'm just very scared right now of upsetting my parents totally as they are still completely in denial. I am so glad to hear that S and you are benefitting from such a service, you both so deserve it.

    Wishing you lots of love Nicky x

  • Hi Nicky, S got called into see our GP this week. He had received a letter from the hospice, asking him to review S's medication. He is on Warfarin and had just had a fall, so they weren't happy. Decided to keep him on the tablets, but it's another example how the hospice looks after you! Do try and get your parents involved with your local one. I'm sure S is a bit more relaxed now! They had a meditation session this week, which he really enjoyed! That would have been totally alien to him before!!!

    Lots of love


  • Nicky yes it the st helena hospice. On tuesdays at the clacton centre they do respite and reablement wich includes a dinner. Brian is starting on the 27th. We had a lady called nickie come out to talk to us about the different services that they provide (to many to list) and they thought it would be good for Brian to go to the tuesday session. I will go in with him on the 1st day just to settle him in. Janexx

  • Thank-you Jane for your reply. I sincerely hope Brian gets on well at the centre and that you feel comfortable enough leaving him once settled so that you can get some well deserved rest. In my only 1 conversation with the hospice so far they were wonderful so I am very hopeful for the benefit they will bring. Here's to hoping i can get to the point of convincing my parents it's a beneficial thing. I think I will ask the hospice if they would be willing to visit my parents as it might go down better coming directly from them than us children.

    Lots of love Jane, Nicky x x

  • Hi Heady, I'm so pleased you are in contact with the hospice. It has made so much difference to us. Colin has been going for about 18 months now with only a short break. For neuro patients, at our hospice, you do 12 weeks on and 12 weeks off but after the first 12 week break he has been going continuously as they said with PSP the change can be rapid and they thought it would be better if they saw the change. During the 12 weeks off, they provided a volunteer sitter to come to our house so I could go to my art class. She only came for 2 hours but it meant I could get out. Colin can't do the crafts but when he first went, someone played cribbage with him. He has reflexology every week, strokes the patting dog when it's there, goes weekly to the gathering, a spiritual service and all the volunteers and nurses talk to him. Carers are given 6 complimentary therapies, massage, reflexology whatever you want and I am always offered tea and biscuits when I collect him ( I prefer to do that as the only time they collected him they were late and I missed a lot of my class.

    They also talk to you both about end of life preferences, DNR, PEG feeding etc as well as the course you will be doing on caring.

    So anyone else out there who hasn't contacted the hospice via your doctor, do it now, you will miss out on so much if you don't.

    Incidentally, there are now three men with PSP at the hospice day centre on Fridays.

    Enjoy your days of freedom Heady, I do.


  • Must plan it a bit better this week, let time get away last week.

    Lots of love


  • I agree with all you say. Chris has been going to our hospice since Sept. They are wonderful. So kind and understanding. They talk to him and he has done reminiscence and is starting exercises next week. He loves it and I appreciate the break and feel less alone. Jean

  • If only Turkey had a hospice movement!

  • Hi Pattz, all ours in the UK are charity based. You never know, a small one might have started up somewhere. Check it out!

    Lots of love


  • You could have been describing our local hospice the staff were calm, caring and knowledgeable and had the facilities to match, even a volunteer hairdresser. I would issue a word of warning should you use the lavatory, regarding pull cords. I mistook the alarm cord for the light switch and summoned an army of assistance I didn't altogether require!!!! Best wishes, Jerry.

  • Hi everyone. We're based in Ireland and my mum goes to local hospice day care once a week and has also had respite. I know the irish hospice movement is for all people with a life limiting illness ie non curative whether cancer or not. Mum's bf in day care has mnd. Hospice care is about living until the end with comfort and dignity not just dying.

  • hi al

    ive not ben able oo use ym p utter 4 weeks n ow --keybd not wigkg driven m mad

  • hi al

    ive not ben able oo use ym p utter 4 weeks n ow --keybd not wigkg driven m mad

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