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.

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.

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?”

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.”

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.

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”.

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

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...