Impact of MND on family carers

A diagnosis of MND inevitably affects the wider family that are caring for their relative, whether they are partners, adult children or parents. As one woman said, ‘The illness really is our illness, not just Peter’s’.

Many people caring for or being cared for by a partner said the experience had brought them closer together, but occasionally the diagnosis brought tensions to a relationship or caused it to break down. Dealing with changing roles within the partnership and the household could be stressful, and some carers faced difficult decisions about whether to stop work. These topics are explored more fully in sections on ‘Relationships and sex with MND’ and ‘Work and career’. Here we explore the wider impact on carers’ lives and feelings.

Several people living with MND said they felt sad or guilty about the effect on family members. They were concerned about them becoming physically very tired but also about the emotional strain and the limits it placed on their social life. Some people were adamant they did not want their adult children to feel responsible for their care.

He worries about the physical and emotional burden on his wife and how she will cope in future.

Age at interview 60

Gender Male

Age at diagnosis 56

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She does not want her daughters to feel they should look after her – that is not why she had…

Age at interview 54

Gender Female

Age at diagnosis 52

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Most carers said they wanted to provide as much of the personal and physical care as they could themselves, but at the same time said it could be very demanding. People described sheer physical hard work, disturbed sleep and exhaustion, often at a time in life when they themselves were not as young or strong as they used to be.

He and his wife did a lot of lifting. It was hard physically, but as parents they just did…

Age at interview 62

Gender Male

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This father said they used two-way radios, so that their daughter could communicate with them at night if she needed to. Another man got up in the middle of the night to raise his wife’s legs to make her more comfortable in the last months before she died.

Often carers did things for their relatives they would never normally have done. One man said his grown-up son adapted well to giving his mother personal care which one would not normally expect to give to a parent (see Roger, Interview 45 below). Others found this reversal in roles harder to accept. One woman said her mother ‘had an immense amount of dignity and suddenly I was playing a physical role That’s quite a tricky line to cross, no matter how close your relationship is’. Some people were also sad to see younger children becoming carers, although one mother felt her children’s experience of MND was helping them to become kind and caring individuals.

Sometimes people chose to have help with caring, and employed paid carers (see ‘Personal care and care support with MND’). Respite care also gave relatives a break from caring, although several said they were too worried about their relative to relax. (See also ‘Hospices, respite for MND and thoughts about future care’).

She needed a break but was very unhappy about the quality of care at the hospice. She came home…

Age at interview 40

Gender Female

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Several carers felt they had lost much of their social life and independence. When symptoms were advanced, many carers were unhappy about leaving their relative alone, sometimes even for short periods. Others were able to keep up their own activities and continue to work, and felt this was important. One woman felt sad that as she gradually did more and more things without her husband she realised that was what her future life would be like. One man explained that he and his wife use walkie talkies to keep in contact when she is out walking their dog, so she can relax and not worry about him.

He doesn’t feel he can ever have time off from being a carer, and his wife relies on him for…

Age at interview 73

Gender Male

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Everyone has to find their own way of coping. They both feel it is important to maintain their…

Age at interview 64

Gender Female

Age at diagnosis 56

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She advises other carers to try not to be obsessed with the condition, and to enjoy each day as…

Age at interview 40

Gender Female

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Several people said they began to act like a personal assistant, helping to coordinate professional care, especially if their relative had difficulty speaking. One said he became his wife’s ‘lifeline in communication’. Often, they saw themselves as a point of continuity between the different services involved. One man said,

‘I saw my job as taking care of Teresa’s needs, being her representative, being her mouthpiece, as well as her partner and everything else. I spent far too long as a medical secretary ringing people who didn’t know what I was talking about.’

This responsibility was not always welcome, but people felt strongly that it was important to do the best they could. Sometimes their role as part of the care team seemed to be recognised and respected, sometimes not. Some carers also said they spent a lot of time trying to find solutions to the different problems facing their relative as symptoms progressed.

He took responsibility for coordinating Di’s care himself – it was exhausting, but worth the effort.

Age at interview 55

Gender Male

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Inevitably people did not always find it easy to keep positive. Many carers had periods of frustration and anger, and some became depressed, especially in the first few months after diagnosis. In the longer term, there was continuing sadness about the impact of MND on their loved one and anxiety about the future. Some people found taking an antidepressant helpful.

Becoming a carer has crept up on her. Each step feels like a mini-bereavement but it’s amazing…

Age at interview 62

Gender Female

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Sometimes she tends to look on the dark side, but her partner’s positive attitude rubs off on her.

Age at interview 52

Gender Female

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The uncertainty of how his wife’s condition will progress causes him great anxiety.

Age at interview 73

Gender Male

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It is sad to have changed from being just a wife to being a carer. She misses him being able to…

Age at interview 54

Gender Female

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Some people found taking an antidepressant helpful.

She has been depressed about the loss of their future as a couple. She takes an antidepressant,…

Age at interview 54

Gender Female

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One woman described the support she had had from a carers’ group and her MND Association visitor, which had helped her deal with negative feelings.

The hospice has been fantastic and set up a carers’ course. Her MND Association visitor knows how she feels and helps her deal with guilt and negative feelings.

Age at interview 62

Gender Female

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Some people felt inspired by the warmth and support from other family members and friends and found the experience had given them rewards and insights they had not expected. One father advised others to involve friends, neighbours and other family members at an early stage.

The generosity and selflessness of friends who helped him care for his wife has made him see the…

Age at interview 55

Gender Male

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Roger found strength from somewhere. It was wonderful to see his sons involved in caring for…

Age at interview 67

Gender Male

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The MND Association also provide resources for carers, including a guide called Caring and MND: support for you, to help with the challenges of the caring role. These can be downloaded from their information pages on their website, along with resources about symptom management and daily living with MND.

Their information resources for children and young people can also help families communicate about MND, to help younger family members cope with the changes happening around them. This is particularly important where children and young people get involved in supporting the person with MND, and therefore become young carers. There is support available and the MND Association can help with guidance, support grants for young people affected by MND and other assistance. See their web pages for young people and their information pages for wider resources. See their ‘Getting help’ pages for information about grants and support.