i am a new member here, i have read and read and ant beleive i finally found somwhere i can relate. im actually scared to start a post because it will be so long. but one day i will. for now i will carry on reading, my dad is last stage in my opinion but hes just left to get one with it, apart from nurses treating bed sores and infections the rest is up to us. thanku all for sharing, i didnt realise this forum exsisted. hugs to all xx

8 Replies

  • Hi gel68, welcome to this site, a very special friendship group. I'm sorry about your dad. PSP is a terrible thing to live with, PSP and bed sores is horrendous. I hope the nurses are making him more comfortable.

    Keep posting. There is always someone here who can respond, wherever in the world you are.

    Take care

    Nanna B


  • Welcome. I'm glad you found us, though sorry you had to. This site has saved my sanity many times over. Great people, great advice. Lots of caring. Where are you? I'm in the northeast US. I'm guessing you are British. How long since your Dad was diagnosed? Love and peace, Easterncedar

  • My husband is also unfortunately in a nursing home (for last 4 months). There is nothing much they can do for Steve apart from keeping him fed, clean and comfortable as he cannot join in the activities. However he has a air ripple mattress which is a great help and no bedsores I am sure due to that. May be worth speaking to the home to see if they could supply one to your dad. Also I am sure you have looked into it but apply for CHC as soon as you can via your social worker or the home. We have just been granted this at the second try. I felt as if I was put through the wringer and the questions were very intrusive and difficult but worth an awful lot to you if you succeed. The nursing staff at the home helped with this. I am presuming you are in the UK. May be different rules if not. Wonderful site and any questions you have are generally answered by very experienced carers who know what they are talking about - not just book learning, practical help from people who have been through everything. Good luck with your father. You are not struggling alone xx

  • Showaddy

    CHC? I'm newer to site and when to get them involved? Who to call?? Thanks! God bless!

    Debbie M

  • CHC is funding by the National Health Service rather than social services paying the nursing element of care and the rest made up by the patient. This funding is however nearer the end of life as it is health needs based rather than social care needs. If you put chc funding into google you will see the criteria. It is strict and I didn't think I would get funding this time but luckily Steves nurse intervened as well as the social worker who was at the meeting. Your community matron or nursing home manager should help you as you can apply either for help in your own home or a care/nursing home. It is saving me £868 per month which is what I pay for his board and lodgings - so you can see why I was happy to be accepted for this!! xx

  • Hi actually getting CHC funding sounds horrendous why should they be asking intrusive and difficult questions in a situation that is bad enough. It is very off putting but maybe thats what they are hoping !!!

  • I thought that as Steve is so poorly there wouldn't be any problem. How wrong I was. It is worth trying to get accepted onto the scheme but it is def a struggle (or was so for me). It is worth looking on the internet (age concern is a good site) for information as it is very complicated - at least 2 hours of discussion and questions. I felt wrung out by the time I had done!! Good luck when you go for it. Pauline xx

  • gel 68

    I can certainly relate. I just found these good people and friends not even a week ago. My husband was diagnosed with Parkinsonism. 2013, then diagnosed CBD 2014. Hang in there you will be encouraged and learn a lot about caring for your dad. Keeping you and dad in prayer to "daddy"God.

    Debbie M

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