Motor Neurone Disease (MND)

Impact 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' 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. 

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. 

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.” (See Interview 47 - Bev's story). Some people were also sad to see younger children becoming carers (see Interview 10 - Kim's story), although one mother felt her children's experience of MND was helping them to become kind and caring individuals (see Interview 21 - Sarah's story).

Sometimes people chose to have help with caring, and employed paid carers (see 'Personal care and care support'). 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 and thoughts about future care'). 

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 (see Interview 49 - Una and Bill's story). 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.

 

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. 

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.


Some people found taking an antidepressant helpful.

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.

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 (see Interview 46 - Peter and Olivia's story).

Information and support for those caring for people with MND can be found on the MND Association's website.  The MND Association also provide a carer’s pack called Caring and MND: support for you, to help unpaid carers to meet the challenges of the caring role.

Last reviewed September 2014.
Last updated September 2014.

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