When we talk about ‘caring’ for somebody in everyday language we can mean many things; feeling affection or love for a person, wanting to spend time with them, behaving protectively towards them, and so on. When we talk about caring for somebody whose health is impaired we often mean different, or additional, things. This might be about supporting people to do things they want, or need to do because the impact of the illness is such that they are unable to do so on their own. For some this will mean providing total care because their condition has deteriorated.
The term ‘carer’ does not always sit comfortably with people who give this type of support because it is often an extension of their relationship with that person. In North America this tends to be called ‘care-giving,’ which helps to distinguish it from ordinary, everyday caring. Many of the people we spoke to talked about caring, in both senses of the word, for their relative, partner or friend with multiple sclerosis (MS). Living alongside someone with MS, even if you are not in the same house, could mean supporting them with everyday things like cooking, shopping, cleaning and with personal care like getting in and out of bed, washing, getting dressed, using the toilet.
The condition of MS affects people differently, and according to the type of MS diagnosed the condition can fluctuate. There may be times when people need a lot of support because they are experiencing a relapse and at other times they will be in remission and want to be as independent as possible. For some who have a more progressive form of MS, their support needs will increase more quickly. This can make caring for someone with MS challenging because of changing needs and no recognised pattern of disease progression.
Sometimes the role of carer was seen as giving emotional support. Although Christine talked with her friend about helping with practical things like shopping, when he lost bladder control in a public place and was embarrassed she helped him most by “comforting” him to ease his embarrassment and sense of humiliation. On top of the extra domestic chores that he does, David sees himself as a “cheerleader” to keep his wife’s spirits up. For Anthony, too, it is important to support his wife emotionally as well as physically. As a teenager, Nicola felt responsible for supporting her mum when she got upset that her MS was getting worse.
David does nearly all of the household work now and is constantly trying to juggle things to keep us all going, but also to keep us cheerful.
Because his wifes self-confidence has been knocked by her MS, Anthony wants to bring her up when shes down,’ as well as giving her physical help.
MS Specialist Nurse talks about the role of the family and about providing family members with the level of support that they need or want to help care for their relative.
For some people the role of carer was seen more broadly as looking out for the best interests of the person you support, when their physical care needs were being met by paid carers. Alice’s former partner, still her best friend, has 24 hour care at home and Kay’s brother lives in a care home. But they both see themselves as carers because of their active contributions to the wellbeing of the person with MS.
Kay has done some physical caring for her brother, but the most important thing at the moment is that staff in his care home know that she is responsible for him and that they need to keep her informed about his care.
For Alice, being a carer means being there because I want to be there. Because I love him and want him to be as happy as he can possibly be.
Where physical help was needed some people were able to share household jobs, dividing them up on the basis of what the person with MS still wanted to do. Bernard and Paul Y did all the cooking and shopping; their wives were still able to do washing, ironing and some cleaning. For Ian, the responsibility for doing “day-to-day stuff” had grown over time, but he didn’t see it as a burden.
Some people talked about having to “do everything,” but this could mean different things. Kate and Robin do all the domestic jobs, but their partners don’t need help with washing and dressing; Louise’s husband needs help with fastening buttons but otherwise can dress himself. Mike calls himself a “full-time carer” because he feels that his partner needs him to be with her all the time, but they do have paid carers to help her get up, washed and dressed. For many people in this situation of having to do pretty much everything, planning became a really important part of daily life. Kay Z, Dave and Kate all tried to be one step ahead. Karl said that he can no longer go out spontaneously for a drink after work.
For some people, though, MS had led to profound disability and the need for much more help with everyday living. Eric and Tony both talked about their partners now being fully dependent on them and Anita remembers that, as a teenager looking after her mother, she was “always conscious that I was my mum’s life, really.” Eric said, “You don’t think it’s going to, but it affects your whole life.” Tony thinks that a “carer’s life develops over the years” and that now they have got to a stage where his wife “lives her life through me.”
Tony thinks about caring as a job, always looking out for the best ways to help his wife.
Recalling her teenage years, Anita talks about some long term impacts on her of being her mum’s main carer.
Not everybody we spoke to thought of themselves as a carer, even when they talked about caring, but some peoples’ idea of themselves had changed from, say, being a husband or wife, to being a carer. Nearly everybody took on this role of caring very willingly, even when it was hard, seeing it as part of their relationship. For Betty the role of carer was something that she felt had been forced on her by circumstances, and it’s a role that she “hates”. Some people were defined as carers because of the welfare benefits which they received, such as Carer’s Allowance.
Chez’s husband had MS before she married him. She has always seen herself as his carer as well as his wife.
Kate rejects the idea of herself as her husband’s carer. She says they’ve had a long, loving life together as husband and wife and she doesn’t consider what she does to be caring.
Louise definitely sees herself as her husband’s carer, now, though she resisted the label of carer’ for quite a while because she didn’t want to admit that their relationship had changed.
Kay talks about the tension between being a wife and a carer.
Mike said he was “caring, but not a carer”; Ian and John X described themselves as husbands rather than carers. Like Kate, Patience called herself a “wife,” not a carer. Eric said he is now “75% a carer, 25% a husband.” For Karl, it varied depending on how much he was doing to help his partner at any one time. Betty had become, reluctantly, a carer.
Betty had made a conscious decision to become her partner’s carer. But she felt unprepared for the role and is angry that there isn’t more support for carers.
Sometimes people’s health was affected by caring for a person with MS, and sometimes people’s health problems could have an impact on their ability to care. Some people worried about what would happen to their relative if they could no longer look after them.
A lot of people suffered, to varying degrees, from back or knee pain caused by lifting the person with MS, in some cases over many years. This has led to so much pain for Chez, that she is now prescribed morphine, and has had to “step back” from doing the physical care for her husband.
Chez has pain in her back and knees from 20 years of physically caring for her husband. She accepts that she is going to need help with that side of things now, but feels that she is letting him down.
Louise, Kay, Mike, Eric and Tony were all active in trying to keep healthy by exercising regularly (yoga, Zumba, walking, swimming, golf). Several people talked about the lack of “me time”. For others, having a break occasionally and doing something for themselves were vital to being able to keep doing their caring role. Kay points out the need to look after your own emotional and psychological health, too.
Kay’s health is good, apart from a strained back. She exercises regularly and also looks after herself emotionally to avoid, burn out.
Some people talked about having stress, low mood and taking antidepressants. Other people are living with long term health problems such as bipolar disorder, hypertension, arthritis, spinal injury and multiple myeloma (cancer of the bone marrow).
Some people talked about their experiences of having support when they became ill unexpectedly. Robin has a long-term health problem, but he also accidentally punctured his lung and had to go into hospital. He was able to get help from social services to look after his wife. Kate wasn’t as fortunate in getting help when she was recovering from treatment for breast cancer. In Betty’s experience, too, “You can’t become ill, nobody takes over.”
Because Robin had already had a carer’s assessment, the social services department were ready to step in when he had to go into hospital.
Kate is quite critical about the lack of backup for when carers are ill.
Caring roles were temporarily reversed between Ann and her young daughter, recently diagnosed with MS, when Ann got breast cancer a few months later.
Ann’s daughter, recently diagnosed with MS, was worried when Ann got breast cancer. They had a horrendous’ year, but they have both got through it and are looking forward to the future.
For more see Dealing with emotions.