At seven in the morning on a July morning in the year 2002, the phone rang as I lay on our big couch in the living room. Our family had just returned from a trip to Glacier National Park and I was stretched out on the couch to loosen my legs after the long drive back from South Dakota the day before.
There are times when the phone rings that it sounds different. This was one of those times. Within seconds of picking up the call that prophetic feeling became evident. “Your father had a massive stroke,” my mother told me.
When I hung up the phone after consulting with my mother on next steps, I turned to my wife and said, “Well, my life just changed.” Somehow I knew that it would be my role to care for my mother and father. Some of it was simple logistics. My parents lived just five miles away. My brothers did not live so close.
From there the story unfolded in waves. I made the flight to Syracuse a few weeks later to bring my father back home. That first sight of him was a shock. He was highly compromised by the stroke.
The trip home was not easy. Managing all the details of transporting a stroke victim in a wheelchair from ambulance to plane to another ambulance was like flipping one anxiety after another.
The trip left me hollowed out and exhausted. To make matters worse, the Security people at the Syracuse airport had pulled my nearly 80-year-old mother aside to be “wanded” in a random test. She burst into tears and I’ll never forget the sight of those two security guards escorting my 5’3″, white-haired mother behind a curtain. So unnecessary. So stupid. And that was even before 9/11 happened…
Over the next few years, I would have to tend her in many ways. Then in 2005 she died of complications from treatment of lymphoma and an underlying pancreatic cancer. I was there by her side when she died.
We hired series of live-in caregivers that spent 24 hours a day at his home tending to his daily needs. During the early phases of his recovery from stroke, he had migrated through a set of healthcare facilities. Our goal once his health was stabilized was to bring him home. That has worked for the last ten years since my mother died in 2005.
The same year mother died my wife had been diagnosed with ovarian cancer. It was a bit tough, I will admit, to be caregiving director for a dying mother, a father recovering from a stroke and a spouse with cancer. But we made it work through thick and thin. The thick was working through my father’s more-than-occasional fits of anger and frustration at not being able to talk at all, or walk very well. The thin was not always knowing if I was doing a good job or making the right decisions.
You learn to change your perceptions through time and tests of patience, and will. Sometimes it is best to simply walk away from a particularly tense moment. The patient can lose patience, and so can you. Whenever that happened, I went for a long run or a long ride to get my wits back. Then I went back to leading the family in my father’s care and my wife’s long journey through cancer.
There is tough love needed at times when caring for your loved one gets difficult. It is often a test of personal character to measure your energies and dispense them against the challenges of time, demands and expectations (for better or worse) that come with the job. All those things that happen along the way in caregiving––the late night calls, medical tests that don’t deliver answers you’d like to hear, or accidents, falls or failures in hope that can wear down the spirit.
At times when I’d see him in his wheelchair hunched over or asleep in front of the television, a pang of guilt would shoot through me. There was always the feeling that I should be spending more time in his presence. How long would he live, after all? Well, he has lived 13 years after his original stroke. He’s almost 90 years old. that question has in many ways been answered. I can tell you that the ultimate rewards of having given yourself to a cause are an affirmation much like winning a race that was never a race to begin with. Caregiving is, in fact, the direct opposite of a race.
It is a victory of sorts to have persevered even when the net result, if someone dies or grows ill again, does not appear to be a victory. We all pass from this life sooner or later. To have given yourself to the life of another is the highest compliment you can pay to this life.
That is why it is interesting to see so many athletes using their sports to raise money for the benefit of others. Any chance to do good when you are not directly giving care to another is a good instinct. God Bless all of you who race on behalf of the health and well-being of others. You’re training for a good cause: caring enough to give. That’s the best kind of training of all.