A Caregiver’s Story: from rage to relief

After experiencing one of the most emotionally distressing times in our life, my wife mentioned recently that she can’t even imagine the stress I was under. She had been diagnosed with mesothelioma just three months after the birth of our first child, Lily. I haven’t gone in depth with my own personal experiences during that time. Now I am ready to share.

Heather and I were riding that euphoric high that comes after the birth of a child. That joy was short-lived. I recall feeling completely uprooted and disconnected from my own reality with that sudden shift of emotions that came as I stood in the room as the doctors gave my wife and the mesothelioma diagnosis. My wife sat in her street clothes with tears streaming down her face. I felt completely unprepared and overwhelmed by the uncertainty of her future and of our future. The doctor immediately started talking about medical decisions we had to make. As the months progressed, I never really felt ready to make any of the decisions we were forced to make. Somehow these decisions forced us to stay grounded in reality.

During those first few weeks after the diagnosis, I was a ball of emotions. I struggled internally with my own fears and even outright rage over this unexpected turn of events. I tried to hide my feelings from my wife, as I attempted to be the strong foundation I knew she desperately needed. Yet when I was comforted, consoled or encouraged from family, friends, and doctors or nurses, I just let it all out. Several times, I unloaded a stream of profanities at those who were only trying to help, which added guilt to the emotions I was feeling.

In addition to these emotions were the physical responsibilities. As a parent with an infant and a full-time job, I had plenty on my plate already. Then we had doctor appointments, my own medical research, travel arrangements and more. I have never been one to accept help from others, but I accepted it now. I had no other choice. Thankfully, offers for help were plentiful.

Perhaps the darkest point for me during this time was after my wife’s surgery. I had to leave her in Boston to recover from surgery with her parents, and my in-laws kept our baby daughter with them, too. She was coping with chemo and radiation treatments, and I was alone, home in Minnesota, working. Our bills were mounting, and I had no choice but to keep working so we could continue. I worked so much trying to keep us afloat financially that I only had time to visit her once over XX months. This visit included an 11-hour drive in a snowstorm that afforded me only about 24 hours to be with my wife and daughter. I felt so alone during this time and wanted nothing more than to be with them.

As difficult as that time was, I tried to stay grounded in the reality of doing what needed to be done. It’s always easier to look at life in the rear view mirror. Looking back, I do wish we hadn’t gotten that diagnosis, but I don’t regret any of the subsequent decisions we made. This was a time of change and growth for me personally, as I learned to accept what cannot change as well as to accept help from others. I found comfort in making choices that would affect our future.

Today, my gratitude for the experience is exceeded only by the gratitude that my wife is now mesothelioma-free. To read more about our journey and/or follow Heather's blog. 

Written by Cameron Von St. James, Caregiver

Founder of The Empowered Caregiver Network

I have the honor to serve as primary caregiver for my wife, Susan, who was diagnosed with multiple sclerosis in 1980.

The first 12 years after Sue’s diagnosis sailed along smoothly. Both of us were largely able to ignore the disease, with the rare exception of a week or two here and there when she would experience a flare-up. Only in 1992 did I truly make the conscious choice to become (and to remain) a caregiver. That’s when MS began to affect Sue in ways that, frankly, I never associated with MS. At that time, neither did most of the medical community. These effects include memory loss, difficulty finding words, and a loss of multitasking abilities and mental processing speed.

My choice in 1992 to become a caregiver was the easiest decision I ever made. It also proved to be the most difficult in the years that followed until I became an Empowered Caregiver. By my estimate, even though I’ve been a caregiver for 20 years, I have another 30 years or more to go, God willing. So, even though I’m a far better caregiver today than I was as a rookie, I had better keep learning from others. And perhaps I can teach others something, too.

To make that possible, I've created my own blog on caregiving, The Empowered Caregiver Network. To help others and myself further, we hold "virtual support groups" monthly. All that any caregiver needs to join us for support is a telephone and an hour. We meet the last Sunday of every month by phone.  You'll find the details here.


Written by Jay Kraker, Caregiver