Rhyannan (59 years) is single and has two grown children. She works part-time as a ‘death-midwife’ (she is one of two in Canada), assisting people through the process of dying. Rhyannan is one of three caregivers looking after the son of a recently deceased friend. Rhyannan’s care recipient is her friend’s son Tom who has advanced stage MS with dementia. Tom now lives in a long-term care facility. Even though she has a chronic illness (ME) herself, Rhyannan recently decided to become one of Tom’s caregivers as he does not have any family. Rhyannan is now his legal representative.
Rhyannan was a close friend of her care recipient’s (Tom) mother. When Tom’s mother passed away, Rhyannan was the one who guided her through the dying process. At that time she was already aware that Tom had MS. She also knew that he did not have any family, as all members of his immediate family had already died.
Rhyannan became involved in caring for Tom when she found out that he was admitted to hospital three months ago because of a broken wrist. After several tests it was clear that Tom’s MS had progressed considerably, and that his mental state was equivalent to mid-stage dementia. Tom was, for sure, not going to be able to return to his own apartment anymore. Rhyannan explains that she felt particularly frustrated when she found out that Tom had not arranged anything related to his care even though she had clearly advised him to do this at the time his mother had died. This means that there were no arrangements such as a representation agreement, an advance directive or a power of attorney.
Since there were no more family members and very few friends left, Rhyannan and another close friend and his wife were about the only people willing and able to take on the caregiver role. Initially she intended to try out her new caregiving role by assuming responsibilities for only one year. However, because of Tom’s mental and physical state, it was uncertain whether or not he would be able to make his own decisions in the near future. Therefore, Rhyannan decided to immediately assume full responsibility for his care.
Rhyannan explains that many responsibilities and worries have come with this decision. Through the first year, she has come to know, and work collaboratively with, Tom’s power of attorney and close friends. The caregivers are adjusting to their own ways of working, and Rhyannan is not certain whether the group will remain close, or in communication at all, once the illness has significantly progressed. Furthermore, Rhyannan worries about the extent of her own caring abilities, as she also has a chronic illness. In light of what she knows about herself, Rhyannan believes that she will grow closer to Tom during the years to come, and that this may, in turn, affect her emotionally. Nevertheless, in spite of her worries, Rhyannan goes ahead, assisting Tom with his needs, and working to help other people through the process of dying or deterioration by caring for them, thus contributing to their quality of life.