This post comes as a result of a comment made to me through my website from Cameron Von St. James. Cameron wrote asking if I would consider allowing him to tell his story and to share what he learned as a caregiver for his wife, Heather, who suffered with malignant pleural mesothelioma. I said, “Sure, but let’s do more than just tell your story. Let’s give readers insight through the lessons you learned.”
* * *
To learn more about mesothelioma, please go to mesothelioma.net.
* * *
Many of us 50+ become caregivers, sometimes overnight. In my own case if was for my in-laws as my wife and I had to take responsibility for seeing that her parents were cared for as they aged and became more and more infirmed. Our struggles and what we learned caring for mother-in-law became my book, Baby Boomer’s Guide to Caring for Aging Parents. That book was updated re-published as an electronic book just last year and I’m offering it free to anyone who buys my current book, Roadmap for the Rest of Your Life.
So when Cameron asked about telling his caregiver story, and shared with me what he went through, I harkened back to my experiences and was thrilled to say to him, let’s go for it. Cameron was not caregiving for an aging parent or aging partner. Heather was young and, up until her diagnosis, a healthy young woman. But I quickly saw that he had learned the same lessons I had.
So why did he have to learn them on his own? Why do we always have to reinvent the wheel?
Well, the answer is, we don’t. So herewith are the lessons Cameron and I learned in our different but similar experiences as caregivers. And please be sure to read the accompanying Life Story.
Lesson 1: Learn to accept help from others. Just as the patient has bad days, as a caregiver you will have days when discouragement takes over.
Lesson 2: Learn to ask for help. Asking for help is a sign of strength, not weakness.
Lesson 3: Learn to deal with uncertainty while maintaining hope. Hope is the greatest weapon the caregiver has to meet the challenge of each new day.
Lesson 4: Learn and use your time- and stress-management skill. As caregivers, we had to be organized. We didn’t have the luxury of floundering, especially in Cameron’s situation since he also had to care for a newborn infant. A nice side benefit of honing the time and stress management skills essential to successful caregiving is that these same skills allow us to be successful in our careers or schooling.
Lesson 5: Learn to accept that the role you're taking on is new and unfamiliar, and that you will never be the same. Embrace every resource at hand to navigate through the uncertainty and so you can retain some level of sanity.
Whether you’re a caregiver for a cancer patient or an older person needing extra care, oftentimes we caregivers face many of the same challenges, and it helps to share your experiences with each other.
The role of caregiver for a loved one with a serious illness is a significant personal challenge. Uncertainty, chaos and stress dominate each day because of the family role changes that happen. Reach out to others for the encouragement and hope required to never give up the fight.
On November 21, 2005, Cameron Von St. James instantly went from husband to caregiver when his wife, Heather, was diagnosed with malignant pleural mesothelioma, a deadly form of cancer. As he said to me, “To admit I was unprepared for the role is a remarkable understatement.” Just three months prior, they had welcomed a daughter into their lives. The normal chaotic time with a newborn was, instead, about treatment options, travel arrangements, and fear.
His first realization that his caregiver role would feel lonely and overwhelming came immediately after Heather was diagnosed. Following the doctor’s medical description about mesothelioma, he provided three treatment options: a local university hospital, the local hospital that while excellent, did not have a proven mesothelioma treatment program, or going to a noted specialist several hours away in Boston. It was Heather’s decision, Cameron felt. He would make due with whatever she wanted. But faced with their first big choice, Heather could do little more than sit in stunned silence. She was still struggling to work through her sense of shock and disbelief. Cameron’s first care-giving decision was to look at the doctor and say, “Get us to Boston!”
Their daily routine went from order to chaos since Heather was no longer able to work and Cameron had to work part-time in order to deal with travel to and from Boston, providing for their daughter’s daily needs, and going to doctor’s appointments with Heather. Beyond that there was the pervading sense of fear when he allowed his mind to consider that his young wife would die of cancer. Thoughts of spending every penny on medical bills and losing all their possessions in the fight saddened and frightened Cameron. He envisioned himself as a homeless widower and young father. And when he was not in Heather’s presence, he occasionally melted onto the kitchen floor in tears. Only through focusing on the tasks at hand would he masquerade the fears and feelings of helplessness. He did what every caregiver tries to do: he tried to remain a rock and tower of strength and never allow the recipient of his care to see his fears.
Friends, family members, and complete strangers blessed their family during these dark days by providing remarkable acts of generosity, from kind words to monetary gifts. That was hard for Cameron. He had never had to accept help from others. But with little choice, he grew to accept the gifts graciously and not worry about how to thank or repay them.
For Cameron, accepting generosity was the most difficult test of his life. With no way to quit or simply walk away from the responsibility, he had to deal with the fear and anger that took over his whole being. Yet he also told me that throughout the ordeal he never let those emotions take him hostage.
Cameron and Heather’s story had a happy ending, although years passed before their lives returned to some semblance of normalcy. Heather’s treatment programs included surgery, radiation and chemotherapy in the fight against mesothelioma. Against all odds, and despite the typically poor prognosis for mesothelioma, Heather beat this horrible disease. Seven years later, she remains healthy and cancer free. To read more about their story and about mesothelioma, you can click here for Cameron's blog and here for Heather's blog.