Can you tell us a little more about you and your wife’s story?
On November 21, 2005 Heather and I found our world turned upside down when Heather was diagnosed with malignant pleural mesothelioma. A cancer so rare, that only 3,000 people are diagnosed each year and sadly there is no cure.
Just three months prior, we had celebrated the birth of our only child, our daughter Lily. At a time when we thought that we would be getting used to our new role as parents, we found ourselves struggling with the prognosis of mesothelioma(15 months) and our new lives.
Heather and I struggled with the chaos that came with the cancer diagnosis. Originally, Heather was given 12 to 15 months to live. We could only plan our lives from one medical appointment to the next. We ended up traveling halfway across the country for surgical treatment.
Heather underwent an extrapleural pneumonectomy; a surgical treatment involving the removal of a lung, a portion of the diaphragm, and the linings of the lungs and heart (parietal pleura and pericardium). The surgery was over eight hours and It took Heather months to recover enough to then undergo chemotherapy and radiation.
Over the next few years, while being a caregiver to Heather and dad to Lily, I returned to school full time to chase my dream job. I worked full time, went to school full time and graduated with high honors at the top of my class in June of 2010 with a Bachelors of Science in Information Technology.
Today, Heather and I write and speak about our experiences, Heather as a cancer patient and advocate, and I as a caregiver. We are both active in the mesothelioma community fighting for an asbestos ban in the U.S and working toward a cure for mesothelioma.
What was the hardest part of being a caregiver?
Actually, I have been a caregiver multiple times and my greatest challenge varied each time.
Years ago, I helped care for my father as his health declined due to Parkinson’s Disease and Alzheimer’s. The progression of the diseases was not very fast at first; we had time to plan. My family got to talk about their hopes and fears, to plan for my father’s care as the diseases progressed. The hardest challenge I faced when caring for my father was communicating with my siblings.
My wife’s cancer diagnosis was sudden, and not in our plans. Our plans were for us to be celebrating the birth of our daughter and acclimating to our new parental roles. Our lives changed in one doctor’s appointment. I found myself emotionally stuck on anger and struggling to cope with the dynamic and unpredictable environment of living from one doctor’s appointment to the next. It took me some time before I was able to adapt as quickly as the environment we found ourselves in.
I believe each caregiving experience is unique and comes with its own set of challenges. Part of being a successful caregiver is being able to adapt quickly and learn from your mistakes, not dwell on them.
Would you change anything about your caregiving experience if you could?
No. As difficult as it was, I wouldn’t change anything.
I have gained far more from the caregiving experience then I lost, and I choose to use it as a positive motivating experience and not a negative event. I made new friends, learned new values, strengthened my relationship with my wife. Yes, it was hard and some days were challenging, but I gained so much more.
Also I don’t like to play the hindsight woulda, shoulda, coulda game second guessing every decision you make. It makes you focus on your failures and not your successes. Just face the fact that caregiving can be hard, and as a caregiver you are going to have up days and down days. It’s ok to have a down day. Just move on, don’t focus on your failures, focus on successes!
If you had to give one piece of advice to anyone facing a similar situation, what would it be?
Just one? Take care of yourself.
Put your health first. Make sure you are getting plenty of rest and eating properly. Take time out for yourself. I like to remind caregivers to take time out for themselves. You’ll feel better and be able to offer better care if you do; and remember, you are human. Caregiving can be stressful, allow yourself to make mistakes or to have an off day. Spend time with friends and socialize. Keep up your hobbies – try to keep as normal as schedule as possible. Sometimes caregivers feel guilty when they take time for themselves. If you find yourself feeling guilty remind yourself that taking time for yourself today can actually help you be a better caregiver tomorrow.
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