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I don’t think any of us sign up to be a caregiver — we just sorta fall into it. I always figured that Jane, being ten years younger, would be the one to cart me around when I reach my 80’s. The math seemed pretty simple. Husbands usually die before their wives. She was younger. Makes perfect sense. It turns out that the universe had a different plan.
In Sickness and in Health … Till Death Do us Part
I never gave my marriage vows much thought until I had to put them into practice.
To have and to hold from this day forward, for better or worse, for richer or for poorer, in sickness and in health, to love, cherish, and to obey, till death do us part.
In sickness and in health . . . till death do us part. That’s the part I didn’t imagine I’d grow to have a new appreciation for.
The origins of the wedding vows come from the Book of Common Prayer by Thomas Cranmer, Archbishop of Canterbury, first published in 1549 and only slightly modified in 1662. The 1662 change was minor, swapping the original “till death us do part” to “till death do us part.” For a vow to have lasted that long must mean that there is something to it or rather to remind us what we sign up for when we get married.
Vows are a funny thing. They are so simple to say yet putting them into practice takes more than a commitment to your spouse — it takes practice, dedication, and determination.
The Day After Christmas 2015
My caregiving journey launched on a cool December morning. It was the day after Christmas. Jane and I were coming back from staying with family to our one-bedroom apartment in San Francisco. It was barely our second Christmas as a married couple.
We had been trying to get pregnant for the last few months and each time we tried, it ended in a miscarriage. Not to worry, the doctors said, this sort of thing happens all the time. In fact, 10-20% of known pregnancies end in miscarriages with as many as 50% of unknown pregnancies ending in miscarriages as well.
Jane’s doctor suggested a blood test, and since we were driving right by the Walnut Creek Kaiser, we stopped by before the 45-minute car ride back to San Francisco. As soon as we arrived home and I began bringing bags up the stairs, Jane got a call; they wanted her to come directly to the ER.
It’s Probably Just the Flu
If you have ever been to an ER in December, chances are, it looks like something out of a disaster movie with makeshift “rooms” in the waiting area due to the onslaught of the flu bug that’s making the rounds. Jane and I showed up to this situation not twenty minutes after the phone call. It appeared we would have a long day waiting in the ER, but surprisingly, we were moved to the front of the line. Before we knew it, two rather serious doctors told us they were not 100% certain, but Jane might have leukemia.
The shock of those words, “might have leukemia,” sent a chill down my spine and a lump straight to my throat. Clearly, they were wrong. It must be the flu as symptoms are almost exactly the same. The only difference was the little red dots, petechiae is what they called it, on her stomach. We were hopeful they got it wrong, but three days later, we learned that was not the case. It was confirmed. Jane had Acute Myeloid Leukemia (AML).
You Don’t Know What You Don’t Know
In a matter of days, we went from hopeful newlyweds trying to start a family to caregiver and cancer patient. The shock of it all was lessened by our families, but the reality of any type of life-threatening diagnosis is that it’s overwhelming, frustrating, and scary. The questions come fast and furious and even when you think you might have a handle on it, some new whammy smacks you in the gut.
For a caregiver, most of the time is an endless sea of decisions, data, and dreaded phone calls to loved ones explaining for the millionth time what’s going on with your charge. It’s isolating, lonely, and most of all, frustrating that you’re helpless to fix the situation.
How Can I Fix This?
Like most men, I want to fix the things that are broken. As a caregiver, fixing things is not an easy task. Some things you can’t fix and as Jane’s leukemia treatment started, I struggled to fix the situation we were in. Of course, there are small things one could fix like getting extra towels, helping her shower, running her business, and taking notes at each and every appointment. Those little things helped, but the bigger mission was curing her leukemia, and that was something I had no control over.
Sure, I could give input, read all the studies, ask all the questions, but in the end it was up to the doctors to figure out what to do. This lack of control made being a caregiver a lot harder for me. I (and Jane) wanted answers and concrete actions to take. Yet, when it comes to cancer, that rarely happens.
Fear, Uncertainty, and Doubt
My biggest fear when I was taking care of Jane was that I would miss something. That’s the one thing I wished I’d known more about when I started being a caregiver — you have to be detail-oriented. Thankfully, the engineer in me is detailed, but there are a lot of things you can take for granted which could be the difference between life and death.
For example, when Jane was going through a Bone Marrow Transplant (BMT), we were given the wrong protocol for after transplant. It was only through checking and double-checking that I did not give her the wrong medications. It’s the most trivial thing, sending someone the wrong document, but it can have a profound impact.
The constant stress and strain of keeping track of pills, appointments, and what she could eat, took its toll. There were days where the only way to calm my racing mind was to escape for a brief moment of “me” time. Usually, these “me” moments had to do with getting a quick hit of dopamine to feel a little joy. My indulgences were donuts, coffee, CBD, and whisky — not necessarily in that order. Certainly not the healthiest of coping mechanisms, yet I knew of few other ways to deal with all the uncertainty.
Friends and family would offer support, but it was draining to have to talk about everything that was going on with Jane’s treatment. As a caregiver, you can easily lose yourself in the illness. It’s hard to rise to the occasion, so you fall back to your comfortable coping grove that gets you through the day.
A Different Kind of Provider and Protector
I felt, like many men do, that I had to provide for my family and protect them from chaos in the world. Before Jane’s illness, she would have told you she needed none of that silly stuff. Still, the desire to provide for our future family and shelter it from harm was strong. When she did get sick, it felt like I let her down in some way. How could I have let this happen?
The truth is, you can’t provide for and protect everyone you love. The world is too random and chaotic. The best you can do is be a provider and a protector in the situations in which you find yourself. For a caregiver, this looks a lot different than it does as a husband. That transition from husband to caregiver was the most difficult thing I had to do. What helped was realizing I could no longer provide and protect on the same level. I had to adapt and overcome my own bias and approach the caregiving role knowing full well it was just as important; some men can’t make the shift.
A woman diagnosed with a serious illness is 7x as likely to see her relationship end as a man in the same situation. The reasons for this abysmal fact are hard to pin down. Most likely, it’s the traditional male/female role at play, since women tend to hunker down and deal with it because of a more emotional attachment to family, while men may want to flee.
I can attest to the fact that the desire to flee is strong. There were times that the last place I wanted to be was sleeping on a fold-out bed/chair in Jane’s 8x10 foot hospital room with the beeps, dings, moans, and awful smells. What kept me committed to being the best caregiver I could be was the support of friends and family as well as my commitment to Jane. I knew if the roles were reversed, she would “ride or die'' with me to the end.
The Gift That’s Hard to Accept
Tragically, Jane died fifteen months after her diagnosis. Those fifteen months were the most stressful, most focused, and the most joyful time we spent together. While that might seem strange to some, the gift of being a caregiver is knowing no matter the outcome, you showed up willing and able to offer the most supportive version of yourself.
Putting forth your best effort is the only thing you can control. Outcomes will be outcomes, but being present, loving, and caring is the gift you give the person you’re taking care of and yourself. It may seem and sometimes feel like caregiving is a thankless job. Caregiving is a gift that will at times be hard to accept. With the passage of time, it was an honor to be Jane’s caregiver and honor our marriage vows … in sickness and in health … till death we do part.
About the Author
Jarie Bolander is an engineer by training and an entrepreneur by nature. He is the author of seven books on business, leadership, and entrepreneurship. His latest book, "Ride or Die: Loving Through Tragedy, A Husband's Memoir," is a departure in subject matter and he describes as "equally helpful in navigating the morass of loving through tragedy."