Inherited motor neurone disease (MND)
Impact of caregiving on family carers
Providing care for a relative with MND can impact family carers in multiple ways. This section covers:
- Physical and emotional impact of providing care
- Impact on work and finances
- Impact on relationships
- Adjusting to life after the loss of a family member and care role
Also see experiences of providing care.
Physical and emotional impact of providing care
People described a range of emotions around providing care. They often valued spending time with their family member, and some people felt “privileged” and “honoured” to be able to support them in this way. However, individuals used words like “devastating”, “lonely” and “emotionally draining” to describe how difficult it could be at times. It could be sad to see a family member lose independence and be unable to do things they previously enjoyed. It could also be difficult to support other relatives; one person found being his dad’s “outlet” was an additional challenge when his mum was ill.
Liz Z felt a lot of anger when caring for her mum. Since then, she has struggled with feelings of guilt.
Liz Z felt a lot of anger when caring for her mum. Since then, she has struggled with feelings of guilt.
I get guilt that I didn’t, I felt I wasn’t doing enough, the fact that – like I said before, she went into the hospital towards the end of her life, I’m, I feel guilty about that. And I guess I had to suppress a lot of emotions, so consequently I’ve had trouble with emotional management since, where I’ve, I had to put up walls and barriers, I became very angry, I remember one episode where my mum had to go for an x-ray at the hospital and they had her in… I think she had pneumonia, can’t remember. We went to the hospital, and we were in A&E, and she was there for hours, sitting on a hospital trolley. And I was so angry, I went to the toilet, and I threw the door open and fractured my finger because I’d got it stuck in the door. And that was just anger at everyone because… well, angry at the situation, angry at God, angry at everyone because my mum was left in this position. Because she had the disease, everything made me angry so … because I couldn’t express how I really felt.
Liz Z highlighted that it’s not just the caring itself that can bring difficult feelings, but taking time off. She recalled feeling “selfish” when she wanted time away to go out.
Looking after a family member could also remind people of the possibility that they themselves or other relatives could be affected in the future. Karen described the challenges of supporting her mum and uncle, which affected her mental health. “One is watching first-hand the deterioration in their health, and how debilitating and devastating the symptoms of motor neurone disease are… But also… the implications for my own health and my daughter potentially”. People diagnosed with MND sometimes found themselves thinking back to their own experiences of caring for a family member when imagining how their condition could progress. Dani explained how her brother was her “model” of what was going to happen to her.
Providing care can also be physically demanding and very tiring. Unlike a ‘9 to 5’ job, Maggie pointed out that care work “didn’t ever stop”. JW felt that up until the end stages of his wife’s illness they managed well, but the final months “completely frazzled me”. Sometimes being a caregiver in the past impacted people’s views on receiving care after their own diagnosis.
As a teenager, David found caring for his mum to be emotionally and physically draining. He does not want his family alone to be responsible for his care.
As a teenager, David found caring for his mum to be emotionally and physically draining. He does not want his family alone to be responsible for his care.
I would imagine, well I know, there is more available now than there was 50 years ago. We lived in a fairly rural location when I was in my teenage years, and we do now, but I could pull in support from outside, as in from social services, if they’ve got any money left, or from the county council, and I don’t want it to fall all on my family to care for me. I had that and it drained me as a teenager, it really did. Physically and emotionally just drained me for five years.
Having strategies to help them cope was important for some family carers, from focusing on a day at a time, finding something to enjoy each day, to having an “outlet” such as exercise or taking the dog for a walk. Some had tried medication to manage anxiety and depression. Niki highlights the importance of taking care of yourself physically and emotionally when caring for a family member.
When caring for a family member with MND, “you have to remember your own needs”. Niki encourages other caregivers to find a “vent”.
When caring for a family member with MND, “you have to remember your own needs”. Niki encourages other caregivers to find a “vent”.
Physically, I recognised the need to be fit, you know, because I’m not young and most people who are caring for those with neurological disorders are likely not to be particularly young. So I recognised the need to be physically fit, which in many ways is an anathema to me, except by the things that I like doing. So you have to find a way to remain fit and strong because it demands that you be strong. When somebody no longer eats orally, you have to safeguard yourself from the very real temptation to think, “Sod it, I don’t…” sorry, maybe that’s not one for the tape. But to think, you know, “I have got to remember that I’ve got to eat,” and the temptation very much – I mean, by the time Stuart was settled for the evening, it was often nine, nine-thirty, ten, even when we had carers in. You think, “Oh, I really can’t be bothered,” but you have to remind yourself to be bothered. So you have to keep physically fit, physically strong, you have to remember your own sort of needs. I probably drank too much red wine [laughs]. But hey, you know, why not?
Emotionally, I think I’ve been lucky in being able to be ahead of the game, if that makes any sense at all, because I, I knew what I knew and listened to others for what I didn’t know. It was sort of clear in my mind so you weren’t stressing. You know, you just thought, “Right, well that’s where we are now,” but I recognise that that’s not going to be the case for many people. I had moments of huge frustration when, you know, you just had to go away and scream, but once you’d done that, you then come back and think, “Well, okay, right, crisis over, let’s see where we are.” And being able to go and walk my dog, being able to go and ride my horse or just, you know, be up there and be around that, you know, you can’t stress when you’re mucking out a shitty stable [laughs]. You know?
That’s just… I think what I’m saying is that everybody in this circumstance needs to find a vent. They need to find somewhere they can vent, and anybody looking back on this experience is going to look back on it and say, “I wish I hadn’t done that,” or, “I wish I’d kept my emotions in check.” It was very difficult from time to time when it was just the two of us because, you know, it’s just all on you and that person. And you have to recognise that your person will become very dependent on you, very dependent on you, because you will be their translator, you will be their main carer. Even when we had a package of care in, Stuart always wanted me to be there as well. So you have to find your release valve somewhere and that’s what I would say to other people in the same situation, find it.
Carers found support in lots of places. Some were grateful for family and friends who they could talk to about how they were feeling. Others didn’t want to “burden” those close to them by talking about their experiences, even when people asked, and one individual said, “with my own family, I don’t think they really knew how bad it was… you get used to being a carer and just dealing with it”. It’s not always easy to ask others for help but Sheenagh appreciated the support of a friend who would come over, make her a cup of tea and get on with chores without being asked. Some people found support groups helpful in connecting with other carers, but not everyone felt the same.
People often found that it was after their family member died that the impact hit them. As Angi described, at the time, “you’re so busy and you’re just organising it and you’re just doing it, it’s just part of your normal day, you just get on with it”.
People also pointed out that other responsibilities, stresses and events don’t stop over the period of looking after a family member; some people had to deal with the illness and loss of loved ones, work stresses and raising families alongside care responsibilities.
There can also be an impact on the families of caregivers, for example partners and children, who may have to adjust to the increased responsibility and time pressures on the caregiver. One individual recalled the difficulties of growing up with his mum caring for his dad, which impacted her mental health, which in turn impacted the wider family. It can also be difficult for family members, including children, to see the deterioration of their loved one’s condition, especially given the ongoing worry that other relatives could be affected in the future.
Impact on work and finances
Living with MND has a financial impact, including for carers. People may give up work or reduce their hours, and there can be additional costs for aids, equipment, and any private appointments. Some people accessed benefits, grants and allowances to help with costs.
Niki was able to get the support they needed over her husband Stuart’s illness. She points out that accessing aids, equipment and financial support can be difficult if you don’t know where to look.
Niki was able to get the support they needed over her husband Stuart’s illness. She points out that accessing aids, equipment and financial support can be difficult if you don’t know where to look.
It had a massive financial impact on everybody. I mean, we were lucky so, you know, anything that we wanted or needed, we could buy. One of the extraordinary things about something like motor neurone disease, rather like dementia, is the support, the financial support, in terms of continuing healthcare, doesn’t kick in until towards the very end. So again because of my experience in seeing my mother through dementia, because of sort of prior knowledge, one knew about Attendance Allowance, one knew about Carer’s Allowance. These horrendous sort of doorstop-sized wedges of paper that you have to fill in weren’t a barrier, but I think it’s awful for many people.
You’re not necessarily told, unless you’ve got good care around you, what you’re entitled to. Some of it you have to find out and then you have to wade through the paperwork, and then we decided early on to get the continuing healthcare assessment done because it would then provide a baseline. I mean, we knew the first time we applied that we wouldn’t get it, but it meant that there was a baseline for the next time, when of course we did get it.
Things like powered wheelchairs and mobility aids. I mean, we were tremendously lucky because of the community care team that was around us, and the OTs were absolutely brilliant. And we also have, within our area, an absolutely fantastic medical supplier. So it ended up being seamless, which was fantastic. The powered wheelchair, you know, you might have to wait for weeks and months for an assessment, and then you are not necessarily going to get the full bells and whistles that might make someone’s life that easier, so we again elected to go our own route for that. Silly things like continence care, localities very often only have one kind of continence product, and if that’s not what suits that individual, you don’t get it. So I used to buy all our continence products because I knew what it was that suited Stuart best. We had the great advice of a continence advisor because, obviously, Stuart had a catheter and, you know, you need to work with people to make sure that, you know, you get what is right.
But it’s about having that depth of team and knowing what questions to ask. I think for many people, it’s horrendous because there is no one-stop shop where you’ve got all that information, you know? How do I get Attendance Allowance? How do I get Carer’s Allowance? Who needs to come to assess for this, that and the other? It’s hard, it’s very hard. We were very fortunate on lots and lots of different levels. I just worry about the people who are not going to be so fortunate, either in terms of their knowledge base, their ability to access stuff, the team around them, their financial circumstances. You know, it’s, it’s awful.
Georgia Z gave up her job to care for her mum. Her carer’s allowance didn’t cover living costs and she feels there needs to be more government support for families with MND.
Georgia Z gave up her job to care for her mum. Her carer’s allowance didn’t cover living costs and she feels there needs to be more government support for families with MND.
Carer’s allowance was like £60 a week and that just about pays one bill, which I just, I thought was disgraceful to be honest for the care I did. I was a full-time carer taking on like mental, emotion, you know, and then just to kind of get nothing. You know I had, I had to quit my job, which again I’m happy to have done that, you know, it’s my mum, I’d do it in a heartbeat, but to, I feel like it’s almost, it’s like we’re not being recognised for what we’re doing to have that, so that wasn’t great.
But then I guess the MND Association, because they do offer you know, you can fill in a form and they can give you a grant of up to £500, that was really, that was really nice, but I don’t feel like it should just be down to the MND Association to do that. I feel like the government should be more involved in that, yeah.
Like Georgia Z, Sheenagh gave up her job to care for her husband Jim. She didn’t know if there were other options available, though it wouldn’t have affected her decision. Other people decided to continue working during a family members illness. Adam has remained in a job that provides financial stability, as “you just want to be in the best position possible, financially, to cope with any unexpected things that arise. And also to give the family member that you’re dealing with the best life possible”.
Impact on relationships
Providing care to a family member can impact relationships. Some people felt their experiences brought them closer, made them appreciate each other, and gave them more time together. However, there are also difficulties and strains that can arise in a caregiving relationship. Caring for a parent in particular could feel like a reversal of roles. Although she looked after her mum in ways she hadn’t before, Harriet pointed out that other aspects of their relationship remained, “we always had a good relationship, a bit fractious at points and that actually remained because caring for somebody can be incredibly hard and we’d all get frustrated with one another. I almost am quite glad that that stayed… it was real”.
Caregiving could change partner relationships too. Niki said, “You remain a team which is what marriage is, but you’re not a team who plans holidays. You’re a team that plans what few days of the week you’re going to have your shower… and you’re an unequal team, aren’t you?”. In JW’s experience, communication with his wife changed as her symptoms progressed, though they could still have rows at times, “People say, ‘Did you talk about whether you should ever have another relationship? Did you talk about the future at all?’ But no, we didn’t, not really, because you can’t have deep conversations on a pad of paper or with a computer robot talking”.
Adjusting to life after the loss of a family member and care role
Alongside feelings of sadness and grief, losing a family member is a sudden change for family carers. As Sheenagh points out, “all of a sudden, they’re not there and you’ve got nothing to do, and you’ve got nobody to care for, and you’ve got nobody to care for you, because everything stops”. Adjusting can be difficult.
For Sheenagh, “the hardest part is afterwards”. Having lost her husband of almost 40 years, she has struggled to find a purpose in life and to feel “useful”.
For Sheenagh, “the hardest part is afterwards”. Having lost her husband of almost 40 years, she has struggled to find a purpose in life and to feel “useful”.
I think the hardest part is afterwards, when there’s just nothing. There’s just no purpose in life, there’s… I mean, I’m a very, very lucky person. I had a relationship that some people will never have. I had almost 40 years of marriage to somebody that loved me, and that I loved. Some people never get that in life, but I wonder if that’s what makes it worse, the fact that you had that and then you don’t have it. Just the feeling of uselessness. I kind of almost wish I had someone else to look after, just to feel useful. So that’s the tough bit, it’s being on your own, dealing with it. Thank goodness for my dogs. Yep, they’ve kept me going.
However, Sheenagh has also found that this new chapter of life has bought new opportunities, from travelling to China to climbing a mountain; “my life has become about me”. Others talked about having a changed perspective, living in the moment and enjoying the smaller things. Georgia Z feels like a “completely different person” since losing her mum. She feels stronger in herself and says, “I’ve come out of the end as a very organised person who knows what I want in life, and I guess I have to do my mum and my aunt proud and just keep the awareness going”.
In inherited MND, losing a family member didn’t mean worries stopped, and people sometimes felt concerned about the possibility of relatives developing the disease or of showing symptoms themselves. Some had considered that they might need to take on a care role again. One person said, “part of me feels guilty because I should be looking for a job, and then part of me thinks, well… it’s important that I rest now in case I’m needed again…. every single day I think about it”.
Reflecting on providing care could also bring feelings of guilt and regret over things that could have been handled differently. Maggie advised other carers to “be kind to yourself”, “you will always come away from there thinking, ‘Oh maybe I could have done that differently’. Don’t beat yourself up about it… none of us are perfect, and we can only do the best that we can”.
JW benefitted from bereavement counselling through the hospice involved in his wife’s care, and others emphasised that there needs to be improved bereavement support for family members and caregivers after the loss of a relative.
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