Rachel is a single 27-year-old woman who works full-time as a lawyer. She has cared for her mother (whom Rachel describes as a proud Caribbean woman) since she was a teenager, when her mother developed multiple sclerosis. Rachel became her caregiver when she was 14 years old. Her mother is now 61 and is semi-independent, living alone across the road from Rachel in an adapted apartment, where she receives daily support from Rachel and several paid caregivers.
Caring for her mother’s chronic illness has been an integral part of Rachel’s life since her early teens. It took some time before her mother was properly diagnosed – Rachel actually felt relieved to learn that it was multiple sclerosis and not Lou Gehrig’s Disease. Without her father around, Rachel soon became the primary caregiver, and continued until her mum started using a wheelchair and needed more help from other health and social service providers. Rachel loves her mum very much and they continue to have a very positive relationship, but Rachel feels that at 27 years old, she needs to start making different decisions to begin her own adult life. Rachel works long hours as a full-time lawyer, and has made many compromises and sacrifices around her own lifestyle, academic pursuits and life goals to be close to her mother. She dreams about moving east to be closer to friends. She believes that her mother is supportive of her plans to focus more on her own life at this point. Nevertheless, Rachel worries constantly when her mother is alone in her apartment. She calls her daily and visits as often as possible, but feels relieved to have more help for her mum’s care.
Rachel is frustrated by the lack of continuity in the care provided. Once there were about 30 different people attending to her mum in one week. Constant training is required for her mother’s ever-shifting care team. Overall, her interactions with the health and social care systems have not been satisfactory in terms of accessibility, responsiveness and empathy. She has found that the support she has received from friends, counsellors, members of her yoga class--and especially from MS support groups-- has changed her life and provided essential coping skills. Many of the support group members have become close friends.