Permanent care

Hi all, my friend diagnosed with CA only received a carer coming in 4 times a day when it is obvious that she needs constant care. Can you please tell me what help you have and how to go about obtaining that. The GP said this was standard procedure.

My friend can't walk unaided, she can't eat by herself and her speech is nearly unintelligible. She struggles with the carers because they always send someone different and she has to explain where everything is all the time. She's already frustrated and depressed as it is, is there more care out there?


15 Replies

  • Hi Charley :) I hope you get all the answers, you are looking for. As I'm in a different country, I don't know your health system. Could you help her with putting up signs on everything??? (eg: tea/coffee in here sign on cupboard). That might help releive her frustration a tiny bit. Go to her GP and explain your role in helping her to help herself and maybe they will help you with information on any questions you have. She is lucky to have a friend like you ♡

  • Hi joolzzz, thanks for your reply.That is a very good suggestion with the stickers.

    All the best!

  • Hi Charley,

    Does your friend get PIP and the carer's allowance? Perhaps you should have a chat with her about this, if this is possible, and find out about the package which her Social Workers have put together for her. The idea of labelling things is very good and she would also benefit from a laminated card, if you could produce this, as a check list of what is needed. Your friend's carers from the agency should fill in her Care Plan after each visit and examining this would be a sound starting point.

    It is difficult for anyone facing a range of different carers, on limited time, each day, so your friend is fortunate to have you as her advocate.

    Good luck.

  • Hi Maragaretm, thank for the advice. It all happened so fast that we've not got to grips with all of it and her family are in a bit of shock refusing to accept it.

    The school where she worked suggested ill health retirement and we're in the process of applying for that. Because the neurologist took some time to give a diagnosis, there is no package from social workers. The neurologist was refusing to diagnose her because in the summer of last year she had Cerebrolysin, a series of 10 injections( this is made in Austria and it works a bit like stem cells).

    He said that since this is not used in the UK, he cannot know what it is. The doctors think there might be a connection between taking the injections with her steep degeneration. Although in all fareness, I've googled those injections and they seem rather harmless, but the coincidence it's rather big I must say.

    From what I've read on the forum, her degeneration would've happened anyway with CA. Thank you for the advice again and all the best! C

  • Dear Charley, Joolzzz idea about labeling everything is brill! I live in th US so any advice may not help her. I have CA but am not to that point yet! You are a very caring friend...,my best ;o)

  • Thank you February, what are your symptoms if you don't mind me asking? My friend's condition started with her left leg, but she did not have a diagnostic until now that it got to this stage.


  • Dear Charley, I was diagnosed with sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7/ progressive) twelve years ago, although I started having very minor symptoms about eight years before diagnoses. My ataxia effects my balance/gait ( I use a cane when I leave my home to prevent falling, but am still able to walk, extremely carefully, in my home without it), dexterity (writing/printing/fine motor skills), speech (slurred), swallowing (sometimes coughing/choking) and vision (nystagmus/ blurry vision, especially when tired). That about covers it! ;o)

  • Dear February, thank you for your reply. The symptoms are all too familiar, I just couldn't understand why it took them so long to give a diagnostic until the situation got this critical.

    I hope you're coping well and wish you all the best for the future. Charley

  • I hope you get the right answers for your friend. It sounds Iike you are trying to do your best for her. I really hope it works out for you guys.

  • Thank you AnneMenzies, I think we're on the right track now.

    Thanks again for all your comments

  • Thanks, Charley! I'm coping as well as can be expected, as it's a mystery as to why I have ataxia! I just try to have a positive attitude and count all my blessings! I hope you're friend can get some help with coping, as it sounds like she's really struggling. Yes, I don't understnd why it took so long for her diagnosis! My best...,;o)

  • Hi February, positive attitude definitely helps. My friend suffers from severe depression from the initial shock and finds it hard to accept her family helping her with every day living. This is why I'm trying to get a permanent carer for her so she does not have to rely on her parents so much, maybe this would help her felling less hopeless.

    Her ataxia it's a mistery as well, they said it could be genetic, but this is yet to be proved.

    With regards to diagnostic, doctors in the UK have all this limits as to what they say to a patient before they get all the facts straight. This is what I keep saying to her family who've lost all their faith in the NHS.

    Thanks again for all the words of encouragement, I'll pass them all to my friend so she knows she's not alone.

  • Hi Again Charley, Your friend may want to see a therapist to help her cope with all her ataxia symptoms. I saw one several years ago as I was having a difficult time accepting my "new normal" and found it very helpful. I have also been on an anti-depressant medication for years, before my ataxia, originally for a different reason, and am very glad I am! A chronic illness can cause one to be depressed. I still have mini-pity parties, although they're short lived, probably more-so because of the anti-depressant. Just a thought. Please tell your friend she's not alone in her ataxia journey! My best...,;o)

  • Thank you so much February! It does mean a lot to know you're not alone...

    All the best

  • Hi Charley

    I have Cereberal Ataxia, which can become classed as 'unknown ' if a definite cause can't be found. Mine was originally diagnosed as Alcoholic Ataxia but I continue to deteriorate despite total sobriety, so they're going to have to have a rethink on that one! Currently I have a carer twice a day. 1/2 hour in the mornings, an hour in the evening to assist with showering and a take out call twice a week. Having different carers all the time is an unnecessary nuisance! It used to happen to me all the time, so I basically lied to the agency 😮 & told them due to my social phobia (lie) it was essential for me to have a core team of carers who I knew & only occasionally have to deal with a stranger!!😏. (These things just have to be done sometimes 🙂).

    Some very good ideas have already been mentioned. The agency should have a care plan, kept in her home, telling them what is needed. Carers are often pushed for time so a great idea is a wipe board or even a tablet if your friend is able to type & write, listing what needs to be done on each call, as my calls vary greatly! That would be very quick and easy to access, allowing them to get on with their jobs.

    Did you say she doesn't have a social worker yet? Her GP will be able to refer her. If you would rather not have to lie, when her social worker is assigned, he/she will be able to include in her care plan continuity of carers & the reasons why. I have laminated print outs everywhere in my home!!😄 As good as they are, carers will never be perfect, so I have a laminated bin guide, recycling reminders, please clean lint from tumbler, only use the mixed fabrics cycle, to explain just a few 😄. It may vary from county to county or be due to the Assembly in Wales but 24hour care is only provided if absolutely necessary & where I live my care bill has doubled despite my (& everyone's) cleaning & shopping calls being stopped! Not wanting to get too political 'we are most definitely not all in this together'

    Mr. Cameron!!

    Depression, frustration, anger....a whole range of emotions can surface when you're body starts going wrong! A true, empathetic, caring friend....just like yourself....means more than words can say to someone with Ataxia. Talking things through, even just listening can help with depression. Medication of course is very affective, I've been on them for years, from before I was diagnosed. Pain management is also very important for treating depression. My symptoms are terrible coordination in my legs, balance problems, involuntary spasms in legs (shaking), chronic severe pain, lethargy, even apathy (although unwanted), extreme fatigue (coupled with a lifelong insomnia problem!☺️), malaise, depression (occasionally), more recently slurred speech & blurred vision. I have an appointment coming up with my GP so I'm going to insist on seeing a neurologist for a correct cause, if achievable with current science - not that it's of any significant importance really! I wish you & your friend my sincerest best wishes - she is very lucky to have you!! 😊


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