Wednesday, October 26, 2011

A Caregiver's Journey


Hi my name is Susan and I live in Palm Beach Gardens, FL. I am a forty-eight year old mother to my seventeen-year old daughter. I am also twice widowed to cancer. In 2004 my husband Peter was diagnosed with acute leukemia, our daughter was ten. He was in five hospitals around the country and then died eleven months later on February 14, 2005.

I married again to Paul in 2008. Seventeen months later on February 23, 2010 he died of colon cancer spread to the lungs and bones. My daughter was sixteen.

“Life is what happens when you’re busy making plans” should be my bumper sticker, if I liked bumper stickers. I am writing on this fantastic cancer website because I know how it is to be a full time and overtime caregiver. I know of the silent fear, exhaustion, frustration and isolation. I know what it is like to discover strength you never imagined you harbored and for a second you’re proud of yourself but wish it was put to use for something much happier.  I know what it is like to look at my drug filled thin spouse and not remember who he was before cancer. I know what it is like to wonder what the hell my family talked about before cancer. I know what is like to juggle the roles of spouse, parent, nurse, cheerleader and somehow now cancer expert all at the same time. I also know what it is like when you drop one or sometimes all the roles...breakdowns happen! They happened to me.  I also know what it is like to want to scream at the next person who tells you how strong you are just when you want to be taken care of yourself.

In my experience as a caregiver I felt there was no one to talk to and nowhere to go where I would be understood. I believe if we connect to others going through the same pain and suffering then our individual story becomes part of a much larger story. We have each other to listen to, help accept our feelings and let them move through us and make space for the new ones. The new feelings can also include courage, compassion for strangers and gratitude. The heart gets very heavy when pain and fear keep building up and are never released. I went to one weekly support group in Seattle when my first husband was there for a bone marrow transplant. I savored that one-hour where by sharing; my heart seemed a bit lighter. By listening to others, I learned new insights and ways of coping. I discovered humor is a beautiful release and I didn’t have to feel guilty about cracking a smile when my husband was so sick.

In my marriages the cancer won the battle, but in so many more cases it does not. No matter what it is, a disease that affects the whole family, the patient gets treated for the bad cells and is nurtured for being ill. I believe the family needs to be nurtured as well. I raised my daughter from a girl to young women during these very trying years. I learned a good thing for her was for me to let others help. Receiving can be tricky so I try to remember that a load is much lighter when we all lend a hand. Again we can lighten each other’s hearts when we are able to give and receive, when we share. My daughter is doing beautifully. She misses her Dad everyday of course but I taught her when he was terminally ill that the physical relationship ends, bodies die, but the spiritual relationship is eternal. We talk to him all the time.

So I would treasure the opportunity to hear from others who are going through their care giving experience to listen to your stories and be honest with each other about all the layers of living with cancer. Diagnosis, treatments, emotions, finances, intimacy, children and learning to smile politely through the stupid things people find to say but mean well. To tell you how I handled life in the cancer world and life out side it. To me they were two very different places and I struggled greatly on finding a place in my heart I could live peacefully in both at the same time.

I long to offer that lightness I felt in my one support group in Seattle. This website can bring us together, not in the same room but in the same story full unique and precious chapters. 

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