Living alone with mnd

[panniertank]

Thank you Rachel. My next MND clinic appointment is next week so I will make a list of questions to ask them based on your's and everyone else's advice in conjunction with my own thoughts / concerns.

[MNDConnect]

Hi panniertank

I’m sorry for the delay in us responding to you. It looks as though you’ve been receiving some excellent advice from the other forum users.

Speaking to your health and social care professionals is a really good suggestion. They can help to guide and support you with decision making. It is perfectly normal to feel a bit overwhelmed by all of the decisions that you are faced with.

Care provided by Social Services is means-tested and they would carry out an assessment for you to let you know if they are able to provide care, how much care they would provide and how much this would cost. You can contact the Adult Social Services Team at your local council to ask for this.

We produce an information sheet on social care which might be useful and can be found here

As Ellie mentioned, the local hospice can be a really good source of support. People’s perceptions of what a hospice is can often be misleading. A hospice is all about symptom management and living with a life-limiting condition. You can often access physiotherapy and occupational therapy through the hospice as well as complementary therapies, counselling and emotional support. It’s certainly worth being referred to the local hospice.

We produce an information sheet which explains a bit more about the role of the hospice and it can be found here

Please do know that the MND Association is here to support you as well. MND Connect is the helpline for the MND Association and you can contact us for anything. Whether you have a question or concern, or if you just need someone to talk to. We are available either via private message on the forum, via email at [email protected] or on freephone 0808 802 6262 Monday-Friday 9am-5pm and 7pm-10:30pm. Please don’t hesitate to contact us if there is anything that we can do to help.

Best Wishes
Rachel

[panniertank]

Thank you kd1and Ellie for your advice.

[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.

[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.

[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.

[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.

[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.

[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.

[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.

[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?

[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.

[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.

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