I spent the summer of 2005 doing one of the hardest — and best — things I’ve ever done in my short adult life: Being a primary caregiver to my best friend Chuck (truly an old soul and a brother who just happened to have a different mother than mine) who had been diagnosed with pancreatic cancer.
Hard because, by the time the tell-tale symptoms became apparent to Chuck, his doctors and the rest of us — diminished appetite and subsequent weight loss, depression and abdominal pain that radiates ’round to your back — his battle with pancreatic cancer was nearly over before it even began.
A silent killer considered the worst cancer of them all, Chuck’s chances of surviving a year after his “pan can” diagnosis were 20 percent at best. Once the official word was given, however, Chuck didn’t live much more than 100 days before being transported to a hospice for what amounted to an eight-hour stay.
Witnessing my best friend of 16 years dying in front of my eyes was horrible. And, it was one of the greatest experiences of my life, truly a gift. You may be asking, very rightly, how finding the good in such a thing is even possible…
Until that summer of pancreatic cancer, my life as a husband and creative professional over the previous 15 years had been governed almost entirely by countless deadlines — even hourly ones — that had me thinking, planning and worrying multiple steps ahead of the game, every day, all the time. Great for keeping multiple sets of work plates spinning and my managers satisfied (of course, never completely).
Always prepping in my head for the next “deadline-in-waiting” robbed me of the momentary pleasure associated with a job well done, often preventing me from relaxing entirely around my family away from my work. For the longest time, I chalked that up as one of the tradeoffs associated with living the “writer’s life.”
My experience as a caregiver changed all that. Instead of always looking at “the big picture” — an affliction both Chuck and I shared — the main life lesson I learned was one of perspective. In other words, focusing on appreciating what I could do today — this one day, this one hour, this minute — to enjoy my life to fullest and, hopefully, improve it for those around me.
Sounds trite and simplistic, especially when you’re juggling a full-time job, daily visits to your Mom’s nursing home so you can monitor her health and mundane tasks like washing clothes and dishes, doesn’t it? For many of you, there’s not enough hours in the day to take of yourself, much less anyone else very well. What can you really do?
With those concerns in mind, here’s a few life lessons learned along the way, plus some suggestions from valuable sources, all of them resonating with me.
1. Take your ego and emotions of the caregiving process as much as you can. Ultimately, this is your loved one’s journey, not yours. You are only helping them navigate this rocky path.
2. At the beginning, I didn’t really understand or appreciate that my friend’s condition was only as good as it was for that single day. Tomorrow was always a different story, a different symptom rearing its ugly head and almost always worse than today. Seizing and savoring the day for all it’s worth is important for the caregiver and the person for whom you’re caring.
3 Get up to speed in a hurry with your friend or family member’s condition so you know what you’re up against, even if you already think you already know it at all. Thought I knew enough about pancreatic cancer, till I started digging. You don’t need or want to be a doctor, just well informed.
4. During this period of turmoil, try to live your life as “normally” as possible, without guilt. My wife and I celebrated our 15th wedding anniversary away from the keyboard and everything else for eight days during my friend’s illness. Spending quality time renewed my spirit and strength as the inevitable end approached. Understandably, you may disagree, because you want to squeeze all the time possible with your loved one. Just remember, however, the quality of the time you spend during this time of daily uncertainty is ultimately more important than the quantity.
5. Have friends with whom to share your frustrations, anger, sadness and grieving. Fortunately, my best friend wasn’t the only very close one I had.
6. Seek out assistance and advice from a mental health professional if you need it. A trouble shared is a trouble halved. I did, and don’t regret it one bit.
7. Helpguide.org urges caregivers to be aware of the warning signs of caregiver burnout, an emotional sinkhole that can easily erase your emotional and physical reserves, especially when your caregiving extends to years of selflessness. In other words, know your limits.
8. Take care of yourself, if not in extravagant ways, through better nutrition and more moving around (some folks call it exercise), even a little bit.
As difficult as this was, I would be a caregiver again in a heartbeat, if asked. Unfortunately, with the health of many of my fellow Baby Boomers in serious jeopardy, that may be inevitable.
AARP Magazine November-December 2007
Helpguide.org: Preventing Caregiver Burnout