In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.
Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.
We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.
Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….
We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…
My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…
One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”
“Of course I love my family! Why are you asking such a question?” I replied
“Because you are never home….”
I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.
So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!
In 2009 my Dad came to live with us. He suffered from Alzheimer’s.
Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.
I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.
I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.
It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.
My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.
I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.
Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.
My life centred round my sick child and family.
Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.
How amazing is this?
If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….
“Love you Mommy…”
“Love you Baby Girl”