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Thread: Living alone with mnd

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  1. #1
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    Living alone with mnd

    Hello. Can you give me any advice about living alone with MND. I am single with no partner and my family will be unable to provide practical support. I will soon be seeing a surveyor to assess if my home can be converted to be wheelchair accessible. But then I have concerns about how much care could be provided by social services etc. People and my family have been mentioning considering sheltered accomadation, extra care homes etc. But I don't know if these would be suitable and what the financial implications are etc. I am devastated by my diagnosis and struggling to come to terms with it. So I am finding it hard to come to terms with all of these other massive decisions to make, especially as I am so alone and isolated.

  2. #2
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    I too faced a big decision after my diagnosis as to whether to convert my house or move to a flat in a care home. I too live alone, but do have a nearby partner. After a great deal of thought and talking with NHS staff, I decided to convert my home. I've not regretted that decision since. It was expensive though, costing several tens of £K. The decision was one of the hardest I've faced, being finely balanced.

    I don't think there's a standard answer, as it depends on personal circumstances.

  3. #3
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    Thank you for your response johnburton. Are you still at the independent stage or do you have social careers assisting you?

  4. #4
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    Quote Originally Posted by panniertank View Post
    Thank you for your response johnburton. Are you still at the independent stage or do you have social careers assisting you?
    I'm still independent, thankfully.

  5. #5
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    Hello Panniertank,

    I am so sorry you are having to make such difficult and heartrending decisions, whilst still trying to come to terms with your diagnosis. You must feel very shocked and alone but here on the forum is a good place for emotional support and practical advice.

    I dont know if this will help you but when I was diagnosed I had alot of support from the professionals and they advised me to try and stay one step ahead so that things didn't become an emergency. I am sure you have been told that progression is impossible to predict and I have had periods of progression and then a plateau for a while. I dont live alone so it is different for me but we had adaptions done straight away. We had to fund them ourselves but it was means tested so it might be different for you.

    It's such a personal decision and at the time I found the advice and adaptions overwhelming but now I am glad it was put in place. You shouldn't be having to make big decisions on your own, though so I am hoping you have support from an MND team including a nurse, physio and OT.

    Take care of yourself,
    Love Debbie x

  6. #6
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    Thank you Debbie. Yes, the biggest reassurance I have at present is the MND clinic staff. But, no fault of their own, some things just seem to be taking a long time to sort out. When I cared for my mum and dad I often feared that the nhs and social care were maxed out.

  7. #7
    I can tell you how things worked for us.
    Even before diagnosis it was apparent our three story house wasn't suitable for hubby. After an OT assessment it was confirmed our house couldn't be adapted so we applied for social housing. We now live in a lovely little bungalow with wet room etc. We had to put ramps in but we're happy to do so.
    We had found a private carer at £20 hour, we paid for her ourselves until the health service took over the cost. This is called continuous NHS funding. Our local MND coordinator and the district nurses sorted this out for us.
    Have you got a MND specialist or even a social worker who can help you find the most appropriate help?

  8. #8
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    Thank you music man's wife. I have contacted the MND clinic to ask if they can contact a social services worker so l can try to understand what care options will be available.

  9. #9
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    Quote Originally Posted by panniertank View Post
    Hello. Can you give me any advice about living alone with MND. I am single with no partner and my family will be unable to provide practical support. I will soon be seeing a surveyor to assess if my home can be converted to be wheelchair accessible. But then I have concerns about how much care could be provided by social services etc. People and my family have been mentioning considering sheltered accomadation, extra care homes etc. But I don't know if these would be suitable and what the financial implications are etc. I am devastated by my diagnosis and struggling to come to terms with it. So I am finding it hard to come to terms with all of these other massive decisions to make, especially as I am so alone and isolated.
    Hi,
    I too am living alone and it is very hard work, with constant problem solving and planning. I moved to a new build - wide doorways, wet room - and have had adaptations added as I needed (like a door opening system). I am currently independent, with just a weekly home help, more or less walking with a walker round the flat but using a powerchair out. Depending on where we live, the best sources of help vary ; for me the OT has been crucial and the MND nurse useful. All my investigations suggest a limited amount of care will be provided and I am told I will have to top up so like you, I worry about all this. But it's about striking a balance; sometimes you can't get ahead and have to focus on making the most of what is still possible right now.

  10. #10
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    [QUOTE=kd1;89852]Hi,
    ; for me the OT has been crucial and the MND nurse useful.
    Thank you kd1. Yes at the moment my OT is going to be key to my decisions. Another question. Have you set up a lasting power of attorney to carry out financial transactions if/when required? I've been told that a solicitor can be assigned to do this but I have no idea yet how much it would cost.

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