Last night while listening to CBC I heard the most interesting story. It actually made me sad to hear it and it reminded me of a similar time in my own journey with cancer.
The topic was on young carers or to translate, children who are care givers to their parents because of illness. I had never heard the term and was fascinated by the idea that it has become so prevalent that we have even coined a term to define the situation. Essentially it was the story of a young single mother who became ill very suddenly, and her children had to take care of her and the household needs during a very scary and unpredictable time. It lasted for years. When I was listening, my first inclination was that the mother was 'expecting' her children to look after her instead of receiving community care. I was wrong! She was receiving multitudes of help from PSW's and the like, but that didn't cover the whole gamut of things that needed to be done. Her daughter was in grade 9, cooking meals, doing laundry and looking after her younger brother in addition to the personal care of her mother such as dressing, feeding, toileting etc. One of the people that came in once a week to do house work, actually complained to the mother that her children were not doing 'enough' . Why couldn't they clean their rooms, do their laundry, etc. Can you believe it? A teacher told her daughter that she was 'using her mother's illness' to get out of doing homework and handing things in on time. So not only was it overwhelming for her daughter, she didn't even feel supported by the healthy adults in her life!!!!! (I pray that was not the experience of my own daughter)
While listening to this and getting past my initial judgemental attitude I realized that I was defensive because it reminded me of what my life had been like when I got sick. I like to think that I protected my young daughter from this part of the illness but in reality I know that she was expected to do more than the average child her age....if nothing but the worry of when she was at school and I was at home. As I listened to the young girl speak of her experiences it was sad to think that in many ways my daughter too had to grown up literally over night. When I was first diagnosed we looked into getting some housekeeping help but were told that my daughter was considered 'too old' and was able to look after herself and the house. I was upset about this but when you are barely able to shit and shower you can't take on the community access bureaucracy too. So we muddled through. The young daughter's , description of how she felt, where she felt that she got support and where she didn't made me understand more fully what my own daughter had gone through.
Not all of it was bad. The young woman did say that she was happy that she could be of help to her mother during this time and that she felt proud of what she had done and how she had grown up to appreciate things more because of it. Yet, there were still scars! My own daughter and I have often talked about how different things would have been and the things that we wouldn't wish differently because of how close we are because of that experience. Yet, it saddens me to think of how it affected her life and impacted her teenage years.
Illness affects more than just the patient. Illness disrupts lives in many ways and more so when there is only one adult in the household to look after things. When that person becomes ill the tasks fall to the children in the home. One of the fears the mother on the radio expressed was that she was afraid that if she tried to get too much help that perhaps it would be determined that the children should be removed from the home. OMG, when I heard that my heart went out to her. That is one thing that never ever occurred to me. I am so glad I was obviously naive enough that I never thought that might happened. This woman had worked in mental health as a social worker, so her fears were not unfounded.
It was very enlightening to hear this documentary. It was also difficult and sad to hear it. I don't think I ever really thought that my daughter was a 'young carer'' but in reality she was. Especially on those nights when her mom (me) was so sick I couldn't even get out of bed or fend for myself. She was alone looking after me.......how that must have been frightening and scary for a young girl of twelve. Thank God we made it through that time and seemed to have come out the other end, a little scarred but blessed to appreciate each other every day! :)