Caring for my dying husband made me a better person by Tracy Grant
The Straits Times Sunday, Sept 11, 2016
Ten years ago this month, my world as I knew it ended.
My husband of 19 years, the father of my two sons, was diagnosed with terminal cancer.
Over the course of seven months, Bill went from beating me silly on the tennis court to needing my help to go to the bathroom and bathe.
It was the best seven months of my life.
Maybe I don’t actually mean that. But it was certainly the time when I felt most alive. I had lived 42 years before I heard the phrases “we have a problem… multiple metastases… on the brain… probably in the lung as well”.
I had become a respected professional, a responsible and, I hope, loved parent, but I had yet to discover the reason I was put on this earth.
During those seven months, I came to understand that whatever else I did in my life, nothing would matter more than this. Even though I really didn’t know how this would end.
For me, there were no bad days. I discovered that the petty day-in, day-out grievances of an irksome co-worker, a child with the sniffles or a flat tyre pale in comparison with the beauty of spontaneous laughter, the night sky, the smells of a bakery. Some days were more difficult than others, but there were moments of joy, laughter, tenderness in every day – if I was willing to look hard enough.
I found I could train to see more beauty than bother, to see my internal barometer to be more compassionate than callous. But I also discovered that with each day, my heart and soul grew more open to seeing this beauty than at any other time in my life.
Several months ago, during a town hall, Hillary Clinton was asked about her faith. She spoke about daily meditations that her faith adviser offers her and said that one has become a touchstone for her. “Practise the discipline of gratitude,” she said.
I had never thought about the lessons of Bill’s illness in quite that way, but as soon as I heard it, I realised that that’s just what I had been doing those months: I had been training myself to be grateful. It’s a very Hillary Clinton-type thought, discipline and gratitude sharing the same sentence. But it was also my mantra, one I’d recommend to every caregiver.
Caregiving has gotten a bad name in the United States. Being a caregiver to someone you love can be transcendent, a gift. And yet for too many it feels like punishment.
There are lots of good reasons for this. Among the nation’s more than 34 million unpaid caregivers, many are ageing, and ill spouses are caring for equally aged and sicker mates.
There often is a lack of infrastructure to make sure that essentials such as transportation to doctor’s visits and medical tests are provided. For some, caregiving lasts for years rather than months and respite services that would allow for a little time off from the relentless nature of the challenge always in place.
I concede that I was very fortunate when my husband became ill. I was young and healthy.
I had a great employer who provided even better health insurance. My bosses basically told me that my full-time job (for which I would continue to be paid) was to take care of my husband.
In the early days after Bill’s diagnosis and brain surgery, being a caregiver called me to be the best reporter I knew how to be.
There was a heady sense that I could out-McGyver the disease by my resources, intellect, grit.
I found clinical trials, talked to oncologists in Texas, Pennsylvania, New York. I knew which chemotherapy drugs would work in the brain and which would work in the lungs.
I was relentless in making doctors and insurance companies answer my questions.
My professional training and willingness to question authority were arrows I had in this quiver and I was going to use them.
It gave me a sense of purpose and it gave Bill great comfort – and more than a few chuckles – to overhear me reading the riot act to some poor insurance rep who told me some treatment wouldn’t be covered.
I don’t know what it feels like to be an athlete “in the zone” – where every pitch is a strike, every shot a three-pointer, but those months were as close as I believe I’ll ever come. I was at the top of my game.
In the latter days, being Bill’s caregiver meant being fully present for as many moments of every day as possible.
Even ones, where my formerly strong, independent spouse needed the type of help that would have seemed unthinkable months earlier.
Well-meaning friends suggested anti-depressants or sleeping pills to “take the edge off”. I can certainly understand needing to do that, but I didn’t want to be less than 100 per cent present; I didn’t want to forget a moment.
When it became hard for Bill to navigate the stairs, he slept on the family room sofa and I slept on the floor next to him, at the ready if he needed help getting to the bathroom in the middle of the night.
It was in some ways reminiscent of having preemie twins and never sleeping more than a few hours at a stretch.
With the boys, I prayed for the day I would no longer have to tend to them in the wee hours.
With Bill, I prayed for another month, another week, another day of being able to have him to care for.
When I couldn’t sleep during those nights, I took to praying the rosary and then began praying it daily even if I had no difficulty sleeping.
There is a reason that prayer beads are common in so many religious traditions dating to well before Christ. For me, the repetition of the Hail Mary while caressing pearlescent beads helped slow my breathing, calm my mind. I came to feel naked if I didn’t have beads in a pocket or a purse, within easy reach while scans were performed, IVs dripped, test results were waited for.
Even during the moments when I was most angry with God, I found that I could talk to Mary on the theory that she knew a little bit about being challenged by God.
Today, saying the rosary is part of my morning ritual, done while walking the dog and bearing witness to the moment when night relinquishes its purchase to a new day.
During Bill’s last weekend, we had dinner together.
At that point, we no longer held onto the illusion of McGyvering our way out of this predicament, although we still believed that he might come home one more time.
We sat side by side on his hospital bed, sharing a Subway sandwich and watching television.
Later, a relative visited and I noted almost reflexively to myself that she’d changed her appearance, and not in a good way. It was the kind of thought I’d usually keep to myself.
But just then, Bill voiced exactly what I’d been thinking in that eerily intuitive, ruthlessly truthful way he had, and I found myself laughing out loud.
“I could live with this man, even compromised as he is, needing as much care as he does, for the next 40 years,” I thought to myself.
He would be dead in four days.
Ten years later, I haven’t started a foundation to cure cancer. I haven’t left the news business to get a medical degree. I work. I pay the bills. I try to be there for my sons.
I will never again be as good a person as I was when I cared for Bill. I will never again have that high a purpose.
But every day, I also try to find and put into practice the person I became during those seven months. I try to be a little less judgmental, a little more forgiving, a little more generous, a little more grateful for the small moments in life.
I am a better person for having been Bill’s caregiver. It was his last, best gift to me.
Tracy Grant is a Deputy managing editor at The Washington Post