Had a meeting re: J's PSP with our Parkinson's Nurse and someone from the Neurology support team. Lovely people, who understood our problems and said I could call them any time. This made me feel better. However, things that worried me are are still there re: care for J if I fall ill, - me to check out a couple of Nursing homes,( which we will have to pay for) so the SS who have a duty of care, will know where to send him, no help there then, re: CHC not v. likely, as "they have tightened up the guidelines." no help there then, re: tablets making J v. tired - if he comes off them, his swallowing may become worse than it is. No help there then.

I had asked the Doc. to refer us to the hospice, for day care. I was told that we can go, but only for eight sessions, and one of those is an assessment, still at least it's a result unlike the other things.

On reflection, one clear thing came out of the meeting, -- it's down to me, as usual. X

17 Replies

  • Hugs and sympathy , I'm in that same boat !!!!!! But I read on here of others who get help with lots of the things you mention........I am thinking where one lives must have a lot to do with it. My husband sees no one , not even a Parkinson's nurse. Next visit to neurologist is Nov 2016. Only ever seen an OT for equipment. I care for him 24/ 7 and manage a bit of time out if my daughter can sit or my 15 year old Grandaughter.

    Some mornings I don't want to wake up. Xx

  • You are so right, it's not an even playing field, so unfair! I started ringing the P. Nurse whenever I had a problem, as it was the only way to get help or advice. My heart goes out to you, what a struggle it all is, but we are doing a good job, so we should all give ourselves a pat on the back, if we have the energy to, that is!! Sending love.X

  • Hi, get in touch with your GP, to refer you to the local hospice. They are not just there for the Day centres. I get a community nurse come around every so often, to check we are OK. Make sure the right people are getting in touch, chasing them if not. She even got us CHC funding.

    I'd like to get some words of wisdom about how to get out of bed in the morning, but don't know any! It's so hard some days isn't it. I just hate the world and everyone in it. The only thing that gets me moving is the thought that I am lying in a urinal and if I stay there much longer, I will be fully aware of that fact!!! Ain't life grand??????

    Lots of love


  • Oh Heady, Life is a nightmare, but sorry, your description of it made me laugh. Thanks for that. After a semi sleepless night due to me coughing and having toothache, I needed it! X

  • After two weeks of sleeping, I was awake half, if not three quarters of the night. Thankfully, NOT, with toothache!!! It's so draining, isn't it! Laying awake, thinking of all things that need doing, what is to come, what has passed! I feel totally washed up this morning. I have been taking some different herbal pills, for relaxation. Like everything else, they only work for a few nights! Oh well, back to the drawing board.

    Keep laughing, it is the best medicine there is for Carers and sufferers a like!!! It's free and no nasty side effects!!!!

    Lots of love


  • Oh yes I know that feeling, it's like you've been told it's PSP, there's no medication, no treatment, go away and come back in six months! In desperation I wrote to our GP, asking if they could ring me, I hand delivered it nearly 2 weeks ago, but not heard anything! The hospice sounds the best bet, that is who I am now pinning my very limited hopes on! Ours did say they short courses! But once you've completed you can start again as soon as a place available, but we only had first assement Monday so still waiting for action!

    As you say all down to you! I don't think the fact that it's rare is any excuse to keep passing the buck!


  • Quite right! X

  • Have you tried e mailing your area Parkinsons support officer . Do try it , they came to me and we talked it all over and she did start to open som doors.

  • Thank you. We have started going to PSP meetings and I have found them to be helpful too. X

  • Do go for the Hospice! The one S uses, run a 12 week course. They are about to refer him back for his 4th group of sessions. Once you are in their care, all sorts of things start to happen. The staff at ours, are brilliant. Always on hand to have a little chat, if you are worried about anything. Never shy at writing/telephoning the various professionals, to get them to step up to the plate. They helped me get CHC funding! I have been to a Carers group, which helped enormously. When S is not attending day centre, I get a regular visit from their community nurse, who HAS dealt with PSP!!! Virtually the only person we see, who has!!! Most of all, they understand what you are going through!

    Honestly, it is A MUST!!! S loves going there as well. Added bonus!!! S finished his last course just before Christmas, so we are both really looking forward for him going back in a few weeks! Because it is treated as a properly run course, it stops that "waiting room" feel. I'm sure S just sits in a chair and sleeps a lot of the time, but that's his choice, he could join in. The best thing is, HE has something to get up for a reason, in the morning, HE leaves the house. HE has someone different to talk to, yes, he can actually communicate when there. (Isn't it wonderful what a young woman in a uniform can do!!!!)

    I was recommended by a PSP Carer, best advice I have ever taken!!!

    Lots of love


  • So glad for you both.

    I hope ours will not just be one course, but as we live in a city, it is very much in demand. I was told we had a place yesterday by the neuro., although the hospice hasn't let us know yet.x

  • Hi, reading Tim's reply, reminded me about Marie Curie. They don't just provide night sittings. We get a guy come in once a week for two hours during the day. They call it a Be-friending service, they try to match up someone similar to the person, I.e. for S, they got a guy that likes sport. Sometimes they sit and watch any sport on TV. Now I have got them playing Backgammon. Didn't think S could still do that, but he is loving the challange! Two hours is not a lot, but it's enough to go to the supermarket. I use to take the dog for a longer walk than he normally gets!!! I don't know if it is countrywide, I was put in touch with them via Crossroads and it's free.

    Lots of love


  • Thanks. Yes, I do have Crossroads and since they started, I have managed to meet up with friends now and again. It makes such a difference, doesn't it? X

  • Hi Robbo

    Besides the hospice ask your GP to refer you to Marie Curie Nurses for night care. Though, a bit patchy of late I have been getting 2-3 night sittings a week for nearly 18 months. I sleep in a different room from M for the night, I still wake when she starts to moan, cry, etc. but can roll over and nap as I know someone is looking after her. The 8 to 12 weeks at hospice day centres is normal so take it and enjoy the time out. Try contacting Carers Trust google the term and contact your local group they may be able to arrange a sitting service for a morning a week, sometimes called Crossroads.

    Your Social Services should allocate a social worker to help with day to day issues, they will also have a list of nursing homes be aware you will need nursing homes not ordinary residential care homes. Get the list and while able visit your local ones, if you like one put you name down for respite or even on waiting list for full time care can always stay on list do not need to accept. Do not give up on applying for CHC though a pain you will in time be eligible, and it helps. In meantime start a diary of falls, loss of speech. Etc.

    You are right it is up to you to fight for everything it is lonely and tiring but if you don't no one will. Keep writing to the site and reading we all have the same road at different speeds.

    Best wishes Tim

  • Thank you Tim, that is really useful. X

  • hi

    my big worry too re being ill, go back to SS they have to do a care plan specific for you and pt, i refused to put next of kin on form and informed SS that if i am ill then they will receive a phone call to implement the agreed plan, i have also told my daughter that if i am not around then she calls them immediatley. be firm hard i know, you can request an advocate who can be with you at these sometimes very stressful meetings.



  • Yes, you are right. It's hard being a tough talking person but I'm learning! X

You may also like...