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.
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
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.
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.
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.
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.
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.
It’s been a long time since you all posted about long term care in later stages of MS, but I’ve just joined this forum this week. I wonder if you found a way to connect more, and how you all survived then summer, going into autumn now. My partner has extreme sensitivity to heat, and to changing temperatures, so we find summers more difficult. I agree with the person who wrote its hard to explain what it’s like to people who haven’t experienced what we have and do. It is a heavy responsibility of care. I have the odd impression that social services expect me to do a lot, and NHS tell me I mustn’t. Although both think I have no choice. Actually I do have a choice, but I want to be with my partner. I won’t abandon him, but MS is cruel I think, to both of us. We try to make the best we can, of shrinking possibilities. My partner has been on a hospital ward for 7 weeks, and comes home tomorrow. I am worried I will lose a life of my own, but it has been very lonely without him home. We are not happy apart, whatever the difficulties we face with more advanced MS. My partner has had SPMS for over 20 years. We are lucky it has mostly progressed slowly, giving us a chance to adjust to each new stage, but every so often there is a bigger, harder jump. I think we hoped we had longer before the MS became advanced, but it is so unpredictable, and even now, I am not sure what’s coming, and what it will be like. I just know we’ve had much less control of our lives. It would be lovely to hear more about other’s experiences, if you read this, and have time.
May I call you? I am in a similar situation and I’d like to discuss it with you. Forgive me if this is not etiquette, I’ve made an account just to send you this reply.