Inherited motor neurone disease (MND)

Providing care and support to a relative with inherited MND

Some people we spoke to had provided care for a family member with MND. This section covers:

Taking on a care role
Experiences of providing care
Help and support for family carers

Caring for a family member with an inherited form of MND brings many of the same issues and challenges as caring for people with MND generally. Hear family carers of people with all forms of MND talk about their experiences.

Taking on a care role

For some people, taking on a care role was said to be a “natural” or “logical” choice, but it was not something that all family members felt willing or able to do. As a nurse, providing care was Maggie’s “task in life”; “I wouldn’t have let anybody else take it away from me”. She noted her siblings had other roles and strengths.

Caring for a family member with MND can be “a big learning curve”. In Sheenagh’s experience, “nobody’s going to come and chat at your door and give you all the information you need. You have to research it”. Georgia Z feels there needs to be better support and training for caregivers, including on what to expect as symptoms progress.

Not knowing what to expect was a particular problem for people who had cared for family members some years ago, when less was known about MND. Mary describes “winging it” when looking after her dad in the late 1990s. Maggie had a similar experience when caring for her mum.

Maggie highlights the difference in understanding and support around MND between her mum’s diagnosis in the late 1980s and her brother’s diagnosis in 2018.

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Age at interview: 68

Sex: Female

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I was in the dark, I had an idea of what it was all about but only from a book that had a paragraph about motor neurone disease in it. And other than that, I had absolutely no idea and we were literally crashing from disaster to disaster most of the way through. That’s a bit big, not disaster but we certainly had to make things up, make a plan as things changed. Without any kind of help or input really at all. With my brother it was completely different, there were people almost hanging around waiting to give us help and it’s so, so different.

Experiences of providing care

The support needed by people living with MND depends on their symptoms, which vary a lot between individuals and change as the disease progresses. Family carers took on a variety of roles, including emotional support, as well as practical tasks such as helping around the house, organising and accompanying family members to appointments, and arranging care packages, aids and equipment or benefits.

People we spoke to sometimes offered respite care, including looking after a parent so their other parent could have some time off. Louisa and her dad do a “house swap”; she goes to support her mum whilst he spends time at her house.

Maggie’s brother John was very much “in charge” over his illness, but she would go and help him for a few days each month so his partner and carers could have some time off.

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Age at interview: 68

Sex: Female

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It was very different, with my mum she sat back and let us take over. With my brother, no way, he was in charge, at every step, right up until almost the very, very end he was in charge and what he wanted was what-. So right back at the very beginning I said to him, I said, “Okay fine, look, I will give you, I don’t know, three or four days a month and I will come and stay with you and we’ll deal with things as we need to”. So he wanted to rearrange his house, so that he could manage from first of all with a walking stick, then his rollators and then his wheelchair. So he got a wheelchair very early on from the NHS and so he sat in his wheelchair for a whole day and wheeled himself around the house, see what he could reach and what he couldn’t reach, what was possible and what was not possible, and I went around with him, marking out what needed to be done so we rearranged all his kitchen cupboards so that the things that he wanted were to hand. We, I didn’t do the electronics but we arranged for light switches that he could remotely switch on and off and blinds and just silly things that you don’t even think about until you can’t reach them, so he was organising all of these things while he could still walk. He was learning to use a wheelchair while he could still walk so if he got caught in a corner he could get up and get out. So, he was on it right from the start because he knew what was going to happen.

Mm because he’d already seen it before?

He’d already seen it, yeah. So, my job was to facilitate all these changes that he wanted to make.

As needs increase, people often require more help with everyday activities and personal care. JW’s wife Jean couldn’t speak from early on in her illness, but in other ways was “fine”. He had to adapt to providing more hands-on care as her needs progressed.

JW’s first thought when he realised he’d be looking after his wife’s PEG was “Oh, God”. He adapted quickly, because “it’s a case of having to, isn’t it?”

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JW’s first thought when he realised he’d be looking after his wife’s PEG was “Oh, God”. He adapted quickly, because “it’s a case of having to, isn’t it?”

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Age at interview: 68

Sex: Male

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The only thing is, you focus on the – it’s a cliché, but you focus on the day and the week, yeah? And you do that. And then there’s another one, yeah? I remember when the very nice lady, the nutritionist lady came to talk about the PEG-feed thing, and I said, “This is great, who’s going to come around and do it every day?” she said, “No, you’ll do it, Mr. [surname].” “What?” I said, “Oh, I suppose, yeah…” I mean, three times a day, you weren’t going to get a nurse in three times a day, that would be madness, wouldn’t it? But at the time, it never occurred to me because I’m not at all a practical person, and all this bloody, had to you know, had to be all done right, you know? This is a thing in your wife’s tummy. Got to be kept clean and everything and the delivery of the stuff and all that, and setting it up three times a day and learning how to do it. I thought, “Oh, god,” but actually within a week, it was no problem. Because as mum used to say, it’s a case of having to, isn’t it?

Some people found doing personal care for a parent particularly difficult. Robyn enjoyed being able to spend more time with her dad but doing personal care was “unpleasant” because it was “degrading” for him. Lillian also reflected on providing personal care for her dad, “he did seem embarrassed, but it was absolutely a necessity and it wasn’t a big deal in the end”.

Caring for a family member often meant helping them to put things in place for the progression of the disease. People recognised that their care responsibilities might increase over time.

Although his mum’s progression hasn’t been as quick as they expected, Adam explains, “You always feel like you’re fighting the clock, because you have no idea of the timeline.”

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Although his mum’s progression hasn’t been as quick as they expected, Adam explains, “You always feel like you’re fighting the clock, because you have no idea of the timeline.”

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Age at interview: 27

Sex: Male

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It’s been straightforward in the sense that we know what we have to do when we need to do it, and I think you can develop a schedule quite quickly when you’re dealing with it and you take the advice of the specialist quite seriously, and you find the equipment that you need. So I think in my case, the progression of my mum hasn’t been rapid and touch wood it won’t, it won’t develop at a rapid pace. But I think you’re always, you’re overthinking a lot, so if it is potentially not as severe as you thought it might be at the stage you thought it was going to be or when the specialist estimated, I think you do overthink. You still question and you try and find answers sooner rather than later, you always feel like you’re fighting the clock because, again, you have no idea of the timeline.

Niki describes the importance of being “proactive rather than reactive” when caring for a family member with MND and giving some thought to the “what if” scenario. For her, this was also about end of life, and she encouraged her husband Stuart to discuss what was important to him before getting to that stage, because “at the end, it all happens so quickly”. She feels knowing a loved one’s wishes is also essential for family members; if such conversations haven’t happened, this time can be “bewildering”, which can then affect them over the bereavement process.

As Niki highlights, carers may take on a key role in helping family members to consider their wishes around care and end of life, and organise the relevant paperwork and documents to ensure these are respected.

People caring for a family member with frontotemporal dementia (FTD) described particular experiences and challenges.

Help and support for family carers

As needs increase, people living with MND may benefit from additional support from outside carers, healthcare professionals and charity and other services such as hospice care, whether on a respite or regular basis. Having a care package is often essential in enabling people with MND to live at home, and to support family carers.

Like people living with MND, family carers had a variety of experiences of professional support. Some welcomed such input and felt well supported in looking after their family member, but others described frustration and stress at poor services. It was difficult when the person living with MND was reluctant to have outside care, but it could also feel intrusive to have people coming into the home.

Niki valued the support of a team of professionals, including a specialist nurse and palliative care professionals as Stuart’s needs increased.

Niki found the community team helpful in facilitating conversations and changes over her husband Stuart’s illness.

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Niki found the community team helpful in facilitating conversations and changes over her husband Stuart’s illness.

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Age at interview: 66

Sex: Female

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He always used to say to me, “Positive mental attitude, positive mental attitude,” which is a fantastic thing, and many people will feel the same. But as a carer, it can be a little bit difficult because you don’t want to prick that bubble. You don’t want to take away the hope.

But especially for me and for people who are of a medical or paramedical background, you actually can, you actually can see it earlier and you know what it means. You know what you’re looking for and you know what maybe would help it, and that’s quite difficult because you have to sell it to someone. And that someone is not a patient or a client or, you know, that person is your husband or your mother-in-law or whatever. So, you have to be very careful about how you share that knowledge, whether you should share that knowledge, when you should share that knowledge.

And I found one of the most helpful things was that because we were lucky enough, we had a fantastic, we have a fantastic community team in our area, so physios, OTs, specialist nurses, district nurses, and one is extremely lucky when that happens. Because something I think that often carers need, if they’re in this situation where their loved one doesn’t want to, you know, bridge that gap and make that extra step, if you have other people around, you find you can say things when they are there because they act as facilitators. You know, rather like your project is going to act as facilitation for many discussions that people will need to have, I found that being able to access the team and be part of that team, you know, was really important, because sometimes just their presence could help you move things around and move things on.

People highlighted the importance of asking for and accepting help. In JW and Sheenagh’s experience, you have to be “pushy” when necessary and “dig your heels in” when not happy with outside care and support.

Liz Z was grateful for the support of the district nurses and other professionals when caring for her mum. She said, “one of the things that I carry with me to my work now is encouraging people to accept help with caring for their mother, father, whatever, because maintaining that relationship is so important”.

Carers found support in other places too. Some people had family help when caring for their relative, like Maggie whose brothers would come every weekend when she was looking after her mum. Having them was “great”, though she points out that this meant additional work in terms of having people to stay, changing beds and cooking. When caring for her mum, Georgia Z was cautious about having people come into the house due to the risk of infection, and her partner found it difficult to stay over and have disrupted sleep when he had work the next day. Her family did not live nearby, which was a barrier when relying on public transport. Other friends and family sometimes found it difficult to see their loved one living with MND, which impacted the support they could provide.

Providing care for a family member can have an impact on caregivers, including emotionally, physically, and financially. People had different experiences of support services for carers. JW was offered some counselling through the local hospice involved in his wife’s care, as well as a massage.

Sheenagh discovered that there are funds available in Scotland not only to care for the person with MND, but also for “the carer’s care”.

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Age at interview: 61

Sex: Female

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Initially, it would have been useful to have been told right at the very onset that I didn’t have to give up my job, I, that there were funds available for carers. It wouldn’t have made any difference, I still would have done it, you know? But for other people who, who maybe don’t have the luxury of giving up their job, they need to know that there are funds – well, certainly in Scotland, I don’t know about England and Wales and Ireland – but in Scotland there are funds available for carers, a huge amount of funds. And the other thing is that in Scotland, MND patients get care in their home free of charge, so the, there is no charge and there’s various ways that the care packages can be used, so you need to find all that out and that information comes from a social worker. That’s where I got the information, we were allocated a social worker, who was fabulous.

But not only did… I discovered not only are there funds for the MND patient and that patient’s care, there’s also funds for the carer’s care, which we didn’t, I only utilised in the last year I got someone to come in two nights a week for an hour and a half while I went to running club, I think it was, or cinema or something like that. And that was my care package. So carers also have a care package.

Others weren’t offered this kind of support, and some people emphasised that improved support for carers is needed.