Kay Y

Kay’s brother was diagnosed with MS in 2000 at the age of 25. He is now profoundly disabled and lives in a care home. Kay visits him two or three times a week and thinks of herself as his champion and advocate since both their parents died. [Kay’s brother died in January 2012, after she spoke to us].

Kay’s brother was diagnosed with relapsing remitting MS in 2000 at the age of 25. His health concerns (impaired vision and clumsiness in movement) were dismissed by his GP but, following investigations through private medical insurance provided by his employer, his symptoms were confirmed as being caused by MS. For some years his symptoms were not all that noticeable and Kay began to feel that his life with MS might not be too bad. He began to decline, though, in 2004 and soon became wheelchair bound. He is now profoundly disabled and is fed through a PEG tube. Kay recalls how much he used to enjoy eating a Chinese takeaway on her visits to see him at their parents home.

Kay is a champion and advocate for her brother, who now has secondary progressive MS and has been living in a care home since both their parents died in the three years between 2005 and 2008. Kay’s mother asked her to promise that she would not put him in a care home but she felt this was too much to ask and was relieved when her brother made the choice to live in a care home near her, rather than be looked after by her in the family home. Kay’s brother moved from their family home to a care home in 2008. The financial arrangements for this have been complex and are still unresolved.

Kay has had to manage all of this alone and sometimes wishes that she had another sibling to share the responsibilities and burdens of caring for her brother. In talking through her experience with a bereavement counsellor she noticed she talked more about her brother than about her parents. She reflects on this as grieving for the brother she didn’t have and for the impact that caring for him has had on her own life. She feels that she has had to postpone indefinitely starting her own family, for example.

Kay also talks about a plus side’ of caring for her brother. They have, she says, developed a much closer relationship because of his MS. If there’s any positive sides of my brother’s illness, I would say that in terms of our relationship I think that that’s strengthened and, and we’ve bonded a lot more than we might have done if he hadn’t been diagnosed with Ms. Kay talks about the importance of finding someone to talk to; family and friends, but also people who share your experience. She recommends taking advice on legal aspects of caring for someone with MS. She also says, Don’t give up hope.’

Kay highlights a dilemma in the timing of decision-making for people who choose assisted dying. Her brother would now be incapable of making the decision.

Age at interview 38

Gender Female

Although she feels, quite macabre thinking about funerals, Kay has to plan for the future, because she is her brother’s next-kin. She finds it hard to engage him in thinking about it without depressing him.

Age at interview 38

Gender Female

The doctor implied to Kay that her brother might die within 12 months. She appreciates that both the neurologist and the GP have been open about this. The conversations are upsetting but it helps to be a little prepared.

Age at interview 38

Gender Female

Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.

Age at interview 38

Gender Female

Kay discovered that finding out who should be responsible for paying her brother’s care home fees was very complicated.

Age at interview 38

Gender Female

Kay went to bereavement counselling after her parents died but found she was talking more about her feelings of grief about her brother’s MS than about her parents.

Age at interview 38

Gender Female

Kay travelled with her brother to Holland for him to have stem cell treatment, because you just want to do anything to try and make them better.

Age at interview 38

Gender Female

Kay talks about her brother’s symptoms being dismissed by the GP as hypochondria. He went to a private doctor instead and was diagnosed.

Age at interview 38

Gender Female

Kay recommends going to counselling to have an outlet to talk about the things you sometimes feel that you can’t say,’ about your experience of being a carer.

Age at interview 38

Gender Female

Kay’s brother used to phone and email celebrities to ask them to pay for his treatment. She says this was difficult to manage.

Age at interview 38

Gender Female

Kay visits her brother several times a week but sometimes feels she doesn’t go often enough.

Age at interview 38

Gender Female

Since 2004 Kay’s brother has gone from walking with a stick to being mostly bedbound and fed with a PEG tube.

Age at interview 38

Gender Female

Having to meet her brother’s needs is a strain in the background of Kay’s relationship with her partner.

Age at interview 38

Gender Female

Kay sometimes feels like her life consists of home, work and visiting her brother. Even when she is out with friends, he is always at the back of her mind.

Age at interview 38

Gender Female

Family life changed dramatically,’ when Kay’s brother with MS went to live with their parents. Kay wonders if the stress of looking after him, however willingly, contributed to their own ill-health.

Age at interview 38

Gender Female

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.

Age at interview 38

Gender Female

Kay’s family was a bit head in the sand’ at first when her brother was diagnosed. She thinks her mother expected the worst because her cousin had died with MS and so didn’t really want to talk about it.

Age at interview 38

Gender Female