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.

Although he sometimes finds himself “mourning the future that isn’t going to be”, most of Adam’s sadness has been in seeing his mum lose the things she loved doing as her symptoms progress.

Liz Z felt a lot of anger when caring for her mum. Since then, she has struggled with feelings of guilt.

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.

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”.

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.

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.

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”.

Caring for her dad gave them valuable time together, but Lillian describes how their relationship changed as communication became difficult. Her focus was on fighting for better care.

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”.

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.