Hi my Mum is diagnosed with CBD. My elderly father is the main carer.. he has health issues himself. what home help can we get in the UK?

I will do what I can although I live some distance away...I am worried about how we will cope with the progresss of this terrible disease and want to start the wheels in motion for support. My mother has occupational and speech therapists involved so far..as well as the neurologist. I am so glad that I found this site as I was at a loss as to know which way to go? Hoping that those of you that are a bit further down the line can give me some advice as I would be most grateful??

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  • Hi Martina,

    So sorry to hear your news. It must have been quite a shock once you found out what you are dealing with.

    Mum has PSP and Dad is her main carer. Mum has carers going in to get her up and put her to bed most mornings and evenings which takes some of the pressure off Dad and someone from the family pops in every day to sit with Mum while Dad walks the dog. My sister usually attends medical appointments and I cover what she can't and help with other things. You say your Dad has health issues too so I would suggest you contact local adult social services and ask for a carer's assessment for him. He is entitled to one under the law. You don't say how old your Mum is but if she is over 65 she may be eligible for Attendance Allowance which, if awarded, will help towards the extra costs of having an illness like CBD. Your Mum's OT may well be able to signpost you to other benefits and to services in your area too, it is worth asking. When you get the carer's assessment arranged make sure you ask about respite as it is important that your Dad takes care of himself.

    Hope that helps a little but if you have more questions then do come back to this site. There is a wealth of knowledge and experience here.

    h

  • Thank you so much 'h' sorry I don't know your name but I am so very grateful for your advice..it has given me an insight into what we might expect in the future and how to prepare for the support we may need...you have really helped me to help my family and I am truly grateful for all your advice. I am so sorry to hear that your mother is so unwell with this terrible condition...words cannot express what I am feeling but I wish you all the best and thank you again for taking the time to reply to me... ps let me know if you can how things are going?

  • Just to add - if you havn't done so already do join the PSPassociation

    pspassociation.org.uk

    They have a telephone helpline and can give you all sorts of useful help and advice. They also have a downloadable Carer's information pack which is very useful!

    It might be useful to ask your Mum's GP for a referral to wheelchair services as, the chances are you may need them at some point in the future and from past experience it can take a while.

    The PSPA also run local support groups for sufferers and carers - details can be found on the PSP website and are often posted on the PSPassociation Blog page of this site (see tabs at top)

    hope this helps

    love

    Kathy x

  • Thank you so much for this advice I have now joined the PSPassociation and I am so grateful that you have taken the time to answer my call for help! I will do all I can now to get the support and help we need...thanks Kathy so much x

  • Hi. All my support. And if you need advice you have no more than write. I do not write English use the translator worse. What advice do you need?. I'm from Argentina. greetings.

  • Get in touch with social services asap. If mum has any falls in the meantime you may qualify for rapid response via the hospital- once she is on this the carers begin to come and other things like physios and before 6 weeks ends you should be visited by social services who will then continue the care.

    Also try the parkinsons nurse-your GP should be able to link to yours. She would be able to advise you too.

  • Thank you for your advice I will get in touch with social services and also links with nurse/GP I really appreciate the help and advice that this website is giving me thank you so very much x

  • Hi Martina, is it your mother that is based in Brighton and Hov? I live here and am caring for my husband who is in his 5/6th year of CBD. Please let me know and I can advise on how i have now managed to obtain assistance.

    Regards

    Lynda

  • Hi LyndaP we are local and at the moment my mother doesn't need additional care but if you could advise on how you obtained assistance I would be very grateful.

    Regards

    Martina

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