In 2005 I became the medical advocate and care-giver for an ex of mine, who had advanced colon cancer and ultimately died in December 2010. As her illness progressed I felt more and more at a loss in knowing what to do and how to help her. I was not, at that time, told of any support available from the BC Cancer Agency, or any other groups, for care-givers. Neither was there much support for the the patient herself, outside of medical support.
It would have been so helpful to have had someone knowledgeable to talk to about what the process would likely look like, what we should worry about and what we should just be conscious of and accept. Why wasn’t she eating? Should we be pushing her to exercise even though she was feeling less and less well? How long might the dying process take?
Apart from Alex’s emotional support at home I felt quite alone. As I found when I was going through my own OC journey, some friends hung in there and called, but many appeared to abandon us. No-one visited my ex except her condo neighbour. I wish that I had known then about the services that the BC Cancer Agency now provides for care-givers. I now know that I would have benefited from talking with their counselors.
I think the system has changed a little in the last few years. Without exception, everyone involved in the process is lovely, compassionate and good at the specific job they do. But more could be done to make both patients and care-givers aware of the support available.
The lesson here is three-fold:
- Physicians within the Agency and at the family practice level should make pamphlets available outlining what support is available, and how that might provide assistance.
- Care-givers and patients should ask for the help they need – it likely is available!
- Support should continue to be offered through the journey. People forget, or are too busy to realise they need help, or maybe didn’t need help the first time round but could use some now
There is an interesting article from Ovarian Cancer Canada about the support care-givers need and how they can try to cope.