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Long term MS

Hi everyone,

My Mum was diagnosed with MS a few years before she had me at the age of 35. It's now 40 years later and she has been bed ridden for over ten years with only the use of her right hand. She has carers and lives with my Dad however he suffers with depression and finds it hard supporting her and pre Covid would often try and go away as much as he could to escape. She has a tv in her room but her eye sight is failing so can only listen to it and spends most of the time in and out of sleep. She is the sweetest person you could ever meet and it breaks my heart and soul that someone can suffer for so long. She has had such a sad life and this awful illness seems to have taken her to the brink and just left her there. I just can't stand the guilt that there is nothing I can do to make her life better. I love my Mum and miss her all the time, it's like grieving but it never ends. I have the support of two siblings which I would be lost without but obviously this affects them too and we all have our issues we have to deal with. I have kids of my own now and I realise how much she must love us and how hard this must be for her.

Im not really posting for a response but more just to be able to say the words out loud to people who understand. I have spoken with friends but it's such a difficult situation to explain to other people and with long term illness people just forget and don't really ask how you are anymore it's not really something you get sympathy for.

Thanks for listening.

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Hi anonymous, I was sorry to read this morning about you and your family’s situation!

Im afraid I have no advice to give, I know you weren’t expecting any.

Do you ever read to your mum? Before I got hooked on watching true crime programs, I always enjoyed a book.

I’m sorry if that sounded patronising but I just felt I needed to suggest something, your story brought a tear to my eye.

It must be really hard for your dad too!

I just want you to know that we feel your pain and would like to hear from you on here again.

send my love and best wishes to your mum.

look after yourselves Kimxxx

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That’s really kind of you thank you. Yes reading and just having a chat but it’s the guilt when you leave and get on with your life. It’s nice that people understand, long term illness of a family member is such a hard thing to explain to people who haven’t experienced it x

Yes I know what you mean.

Im sure of one thing though and that is , if I was your mum (I have two daughters in their 30’s and four grandchildren), I would

want them to carry on in there lives as happily as they could. I would be happy to hear about what they’re all getting up to, and that would make me satisfied. I’m sure it’s the same for your mum!!

take care and don’t beat yourself up, you’re doing your best.

KimXx

Hi anon. I am so sorry for your mum and you all.

I have had PPMS for 23 years. I have a small team of carers and my hubby is my primary carer, but if possible, I leave my personal care to the carers.

I can well understand how bad a toll it has taken on your dad too.

I am hoisted and have no mobility, an SPC and am a full time wheelchair user.

Respite in our local hospice helps us have a break from routine and gives hubby a good break, twice a year for 6 nights each time.

Would this be available at your local hospice?. Hospices arent just for the dying. I’ve been receiving respite breaks for years.

Boudsx

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Thank you for your response and helpful words. This has happened in the past but she is at the point now where it’s too stressful for her if you try to suggest anything different from being at home and my Dad stands by her decisions even if they are not always what seems to be for the best. She is very stubborn but I can respect that as she still wants to decide what happens to her. Our family dynamic is very complicated after all these years with lots of different views on what’s best for her but for now it’s still her decision even if I don’t always agree. I’m glad you get to receive a rest at the hospice my Mum used to always enjoy meeting different people and it’s good that yourself and your husband are able to take a break from the norm. Thank you for your response. Take care.

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Hi, I understand, we are living this too, and it can be seriously tough. My wife has very advanced MS and is largely bed bound but can still sometimes get out into an electric chair via a hoist for a few hours at a time. We have carers weekdays whilst I work and I provide the support for the rest of the time. She similarly listens to the radio most of the day weekdays and the paid carers try their best to read to her or sit by the patio doors to see some sunshine in winter (too cold to go out, plus Covid). Long days for her though, her brain is still fully functioning but her body is not, can’t move, spasticity, throat weak etc. Winter and Covid are compounding her isolation. She dips into an OU online course in Welsh with me at the weekends to stimulate the grey matter, I read it out to her. We have Palliative Care support but this is also limited in what can be delivered to support, and so is an ongoing mental health challenge too as living with this long term at the advanced stage is a real challenge. Ideally, my time would be paid for to support full time with some backup to give me a break, but the social care system can’t do this, which needs fixing. I’ve asked MS Society/MS Trust to both see what can be done to better support those of us in these seriously advanced situations, acknowledging it is difficult. I’d like a group where we can link up abit better and more directly than on this forum, to share experience, insight and learned experience, and support each other with our similar but always different situations. I hope to hear from them soon, it’s been a long winter, and Covid, and the condition… our thoughts truely are with you. We know we are not alone with this, but often does feel that way, we need a better way to link up and share intelligence.

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Hi, I am so sorry and I wish you all the best. I was wondering if your Mum was able to operate a talking book machine (Daisy Player)? My Mum is registered blind and these are a lifeline for her. They are issued by the RNIB free of charge but I don’t know if they are widely available but it may be worth a try. The RNIB have a library of free talking books which are sent and returned via the post. Wishing you all the best.

So sorry for all those who are living terribly difficult lives…even worse if it is palliative.

My heart goes out to you all.

Lots of love Boudsxxx

Give me a shout sometime if you want. Not exactly same scenario but wife has SPMS and is wheelchair based with worsening probs with her one functioning arm…so not good times here at moment.