Living alone with mnd

[panniertank]

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.

[johnburton]

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.

[panniertank]

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

[Deb]

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

[panniertank]

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.

[johnburton]

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.

[Music man's wife]

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?

[panniertank]

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.

[kd1]

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.

[Ellie]

Hi Panniertank,

Just wondering if you're linked in with your local hospice?

They're usually good for knowing what's what and are an extra layer of help, so to speak - social worker, OT, physiotherapist, nursing etc.

Love Ellie.

[panniertank]

[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.

[panniertank]

Hi Panniertank,

Just wondering if you're linked in with your local hospice?

They're usually good for knowing what's what and are an extra layer of help, so to speak - social worker, OT, physiotherapist, nursing etc.

Love Ellie.

Hi, I am ashamed to state I am not entirely sure what is meant by hospice. I have assumed it is a specialist hospital but the NHS also refers to "hospice care". When diagnosed I was referred to a specialist MND clinic. This has OT's , physios, neurologist, speech therapist, respiratory nurse, MND nurse, palliative therapists etc. I can attend the clinic every 3 months, but I can contact them at any time in between by phone.

[Ellie]

Pannier, hospices are sanctuaries for those of us with life limiting conditions (forget about the old institutions where people went to die, they are SO much more that that nowadays!)

They are an extra resource available to us, in addition to the MND Clinic and community services, and often succeed in procuring equipment when others fail by intervening on our behalf. They can also be invaluable by helping with form filling etc. and can be great advocates for us, not forgetting the chance to have a pampering massage...

Find your local hospice here https://www.hospiceuk.org/about-hosp...find-a-hospice and have a read about it.

You have to be referred by a healthcare professional for many, but some take self-referrals - it'll say on their website.

Love Ellie.

[kd1]

Yes, I set up a PoA early on. Cost a packet (solictor) but the local hospice has a tame legal expert who would do it for almost nothing, as I found out too late. As Ellie says, they offer all sorts of help. I went to an 8 week course on coping with illness.

[panniertank]

Thank you kd1and Ellie for your advice.