Multiple Sclerosis: friends & family experiences

MS: support from family, friends and neighbours

Family and friends can be an important source of emotional and practical support, both for the person with Multiple Sclerosis (MS) and for the people caring for them. People talked about the many different ways they were helped by children, parents, siblings and other members of their extended family, as well as by friends and neighbours. They also talked about some of the difficulties they had in getting a good support network in place and maintaining it. 

Paul’s adult children visited regularly and were able to help him see changes in his wife’s condition which might need medical attention:
Robin said his children were ‘absolutely wonderful,’ travelling long distances to visit their mother and helping to find treatments for her. John described how his children (aged 8, 11 and 14) ‘all pulled together’ in the early years after their mother’s diagnosis, though it was ‘difficult for them to come to terms with the fact that their mother was no longer absolutely brilliant’. Paul Z is really pleased to see his grandchildren treat his wife as though she were no different from anybody else in the family. 

Not everyone looked for support from their family members. Norma said that she tended to work through problems by herself, and she felt that it was her responsibility to care for her son. But she was reassured when her adult children told her that they would look after their brother if she should die. Children within the same family could respond differently as they got older, and differently from each other. Chez explained that her daughters dealt with their father’s MS better when they were younger. Now, as young adults, one of them has found it harder to cope and rarely visits her father while the other visits weekly.
Parents and in-laws were another possible source of support. Sarah Z’s mum was the ‘top of the list’ in her support network. Emma’s mother was one of the few people that she could tell about her fears when her husband was being tested for MS. At the same time, parents might face their own difficulties, particularly if they themselves were getting older and less physically able to help. John X’s mother-in-law, gave practical help when she could, but had to explain to the social worker that her ability to help was limited because she was 84 years old. Alice thinks that her friend’s parents don’t visit much because they find it quite hard to see their son’s condition get worse.
People talked about different kinds of help and support from brothers and sisters. Kate enjoys occasional shopping expeditions with her sister as a way of getting out of the house. 

Carole’s twin helped her get through very difficult teenage years caring for their mother. They didn’t talk about it much, but her twin helped her take her mind off it (see below). But another sister ‘didn’t really want to know anything about it at all, because that was her way of coping’. As well as directly supporting a person caring for someone with MS, siblings might offer indirect support too. Louise, for example, was able to have a break from caring for her husband when he went away with his brothers and sisters.
People did not always live near to their families, but often kept in contact with them by phone, email or Skype.
For some, friends were a ‘lifeline’ who helped ‘get you through’. Both Kay Z and Louise said that regular evenings out or weekends away recharged them. At first Stella lost contact with her friends because she didn’t know when her partner would be well enough for her to see them. But later their friends supported her by sitting with her partner when she couldn’t be there and he was having panic attacks. Some people’s friends helped with practical things like picking children up from school or moving house. One of John Z’s friends insisted on vacuuming the house even when he’d done it himself. Others helped with emotions and relationships. When Christine’s friends commented on her boyfriend’s behaviour, it made her think very hard about whether to stay in a relationship with him.
Sometimes people talked about not having as much support as they would want from their family members. Although his brothers and sisters had all moved back to their home town, Morris felt that he still took on most of the caring for their dad. Patience, with no family members in the UK, felt that her husband’s parents didn’t give them as much help as they could have. Anita felt isolated within her family as a teenage carer.

Last reviewed July 2018.
Last updated July 2018.

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