Wednesday, April 24, 2013

Young Carers ........

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 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! :)

Monday, April 22, 2013 did you see that?????

Have you ever thought about what your life would have been like if something major had not taken place to direct it the way it has.   I do!   It is something that I have often thought of , especially since I was diagnosed with cancer.    It is sort of a 'what if' but not in a way of mourning that loss, just in a way of thinking what would have been different.   Most times I can't really find anything of any great regret as although I would not wish this journey, I have learnt to accept it and what it has brought to my life.   What I find most interesting is how other people seem to have thought there life would be different if I hadn't gotten sick.    I will relate a funny story about that.

As I have mentioned in previous posts I have a daughter who was quite young when I became sick.  At this point she has lived with the cloud of cancer over her mother's head as long she lived without it.  Recently, she told me about how she feels she missed out on things as a teenagers because of my illness.  I had often thought of this and felt a little sad because of it, but it wasn't exactly in the same line of thinking as she.    One of the things that she felt she missed out on was the 'hanging out' with friends.   She related to me that many of her friends had hung out at the mall or downtown and that she was never able to do that because of my illness.    I looked at her and said "you think that is the reason you were never allowed to hang out on street corners and in malls?"    I began to laugh and said "if that makes you feel better about that loss, you keep thinking it, but even if I had been well you wouldn't have 'hung out' aimlessly anywhere!!!!!"

The look on her face was priceless.   All these years she had blamed my illness and so was content to believe that her teenage years had been less than her friends because of it.    I didn't get any of the blame!    I often say that the teenage years with her were much calmer and relaxed than most of my friends, and now I know why.    She thought the differences in ability to do things was because of the cancer, not because her mother wouldn't allow it.     It is always interesting to see how someone else thinks about a situation.   Who would have thought that cancer was my 'out' to the terrible teenage years you hear about.   

So, when looking back to see how my life may have turned out without cancer, this is one situation which I can actually say I am glad that I didn't have to go through fighting and screaming about "everyone else can do it" with my teenager.    It is always good to reflect, but it is always good to ask others their just might be surprised how they saw a similar situation!!!!

Wednesday, April 17, 2013

Today.....all we really have!

I will attempt to write today, but my hands are freezing.   Although the weather is much warmer than it has been, this winter seems like it will never end.    Going to Florida in March was very nice but I think it makes it that much harder to endure the remainder of winter here in Canada.   Although, the weather wasn't extremely warm down all becomes relative when you come from the Great White North!!!!    The temperatures were in the 60's and 70's F and I went to the pool everyday.  Some days I was the only one there, or at least the only one in the pool.  I thought the pool was warmer than the air considering it was 86 degrees F.   In the end, a good time was had, the drive back was uneventful (the way you like drives) and it was a nice break from the monotony of snow and cold.

I haven't really felt like writing much since I returned.  I found that I was not nearly as tired when I was down South and feel that perhaps some of the tiredness is more due to a lack of purpose and action.   What I think is I might be 'bored'.   I hate that word and I don't use it lightly but while I was away I didn't feel nearly as lethargic and weary as I had during the months previous.    I had things to do, I went for walks, I swam, I knit, I read.   This lead me to reflect that perhaps I need to keep busy at home in a similar way.   Thus, I have been too busy to write!!!!!  

The events on Monday at the Boston Marathon though gave me reason to pause.  Life is so precious and so unpredictable.    We worry about so many things that we think we can control and then something like that happens and we realize that we have no control.   Who would have thought that attending a run might be a dangerous endeavour ?   Especially the parents of an eight year old boy.  My heart goes out to everyone affected that day, but that particular little boy sits heavy on my heart.
At least the fear I have comes from a disease, not some act of terrorism that randomly kills and maims innocents.    Such a cowardly and evil act!    I just sit and count my blessings that my daughter is alive and well TODAY!   That's all we have in the    Love those around you T|ODA|Y.    Plan for tomorrow but LIVE for today.     I learnt that lesson many years ago but I still must remind myself of it constantly.

Yesterday, something happened that allowed me to remind another of that exact fact.  It was actually funny but in many ways jarred her a little.    A friend and I were having dinner and talking about illness and people who had died from different things.   She started to say how heart disease seemed to be so prevalent in her family and that she figured that if she continued in a similar vein as her relatives  she would live only to about 75......she looked at me and said..."that means I only have about 16 years left of life" which I replied "or you could die tomorrow".   She just stared at me and then said "oh that's a nice thought".    I said yea but its true.  You are worrying about having 16 years to live....think about it we all only have today.       It was a very stark reality but in the end she said  "you know that makes me feel much better" and we both had a good laugh.

So live today, love today, hug someone today, and hope that tomorrow you can do the same.