Caretaking and the Grief of Gradual Loss

TDO Timothy
Sep 6, 2020 · 7 min read

A few months after I’d lost my first husband, Lawrence, a mentor of mine asked me, “How did you grieve?” It was a good question. After all, I’d returned to my 7-to-5 job relatively quickly, I was still supporting a teenager through virtual schooling (with the help of his grandfather), and I was running a business. When did I have my “crushing time?”

Caretaking Changes Everything

My husband didn’t die suddenly. As a matter of fact, I found the first x-ray that foreshadowed the difficult days we would encounter last week — the day that a doctor found avascular necrosis in his left hip joint . It was dated October 2009, two months after we were married. I married my husband knowing he had sickle cell, but neither of us could have predicted exactly how the illness would transform in his thirties.

It turned out that the small vessels that supported bone health in his joints were being severely damaged by sickle cell crises. According to the doctor, we could expect, “Severe, crippling necrosis in several joints over the next ten years, including the need for joint replacement surgeries.”

“What did he mean,” my husband would ask me later that afternoon, sitting on our newlywed bed in Grand Bahama.

“He means that your joints are going to melt away because they’re not getting enough blood, and you might not be able to walk or move on your own in time.”

And that was how it started. He answered me with a simple, “Ok.”

The Grief Began with the Diagnosis

The two of us began grieving together the moment we acknowledged the seriousness of his situation. Decisions had to be made. The most damaged joint was already incredibly painful and needed to be replaced. Our son was six years old… how much were we going to tell him? And his work at the airport, could he continue doing that? What would that mean for our finances? We had just gotten married on the fumes of future hopes, and we were broke.

And the coming surgeries… how many might there be? Could we plan for them?

“Let’s just make sure Chad is okay,” he said.

So every decision we made hinged upon making sure our son would be okay. We didn’t dwell on feelings of sadness or disappointment because that would interfere with securing the kind of future our son deserved to have.

That doesn’t mean we didn’t hurt together. As we attended countless doctor appointments, arranged and completed that first joint replacement, endured seasons with and without wheelchairs and other assistive devices, we cried sometimes and yelled sometimes, prayed and broke down and sulked sometimes.

There were days when it was SO HARD to be positive, but we encouraged each other and we made do.

All of this is a part of the grief cycle for any caretaker.

The Grief Increased with the Severity of the Illness(es)

Some of the hardest times were his weakest moments. There were many close calls, many homebound days, and two long hospital stays before my husband died. That means we — both he and I — had to see him be weak when he most wanted to be strong. As one organ after another began to fail, year after year, we suffered waves of distress. Sure, we had already decided to “tough it out,” but those initial feelings of frustration and despair present themselves quickly and surprisingly, even if just for a moment.

There was one kind of grief at the moment the first significant diagnosis was announced. There was another kind of grief each time the new news was bad or worse. He would grieve as a strong but dying man would, and I would grieve as a determined wife becoming a widow would. Even those types of grief are very different.

With Time, the Grief Became More Manageable

By year five we’d developed certain coping mechanisms. As the wife, I’d learned all about his medications, his blood work, his pain index, his appointments. He mastered the symptoms that signaled a need for the emergency room. As the husband, he did all he could to ease the strain on me in the household — completed vocational rehab, changed careers, took on more of the home and parenting responsibilities. I learned to team lift and basin bathe. We had a system, a new normal, that made life work but also included grief in a practical way.

It was not uncommon for my husband to tell me what he missed doing and how frustrated he felt, and I would encourage him. I would tell him how stressed I felt, and how hard it was to cope when he was hospitalized, and he would encourage me. And we’d curl up and watch TV, and eat snacks.

What else was there to do?

With Death, the Grief Changed

I watched my husband suffer for seven years. We changed his whole life to keep things going: how he slept, how he woke, how he bathed, how he dressed, how he traveled, how he rested, how he worked, how he ate…

We had to be flexible, and we were. It was heartbreaking to watch him suffer with just the idea of each change that had to be made. It was devastating. These were things he didn’t want his wife to do, that he didn’t want anyone to do for him… that he just wanted to do for himself.

And he was so tired of not doing things for himself.

But he kept his promises to me, in that our vows were fulfilled. I’d had my times of sickness and weakness when he was the strong one. And he was a great father to his son, whom he managed to love and delight in the middle of a terrifyingly difficult situation.

So when he died, I just thought, “You’ve done your part. Rest now, thank God. It is enough.”

I didn’t feel like he owed anybody anything.

The Grief Was Different for Everybody Else

This was the hardest part for me after Lawrence was gone. The funeral was newly over, his body was buried, the few supporting mourners we had were gone, but the phone calls were just beginning.

The first call was actually a rebuke! “How could you not tell me how sick he was?!” It was incredulous, since every person that mattered to Lawrence, to whom Lawrence mattered, saw his gradual decline. Later calls were filled with — sometimes hysterical — tears and euphemisms. My personal favorite was, “He was not meant to die this way,” and the most disturbing was, “How did you survive? If you really loved him, you’d be dead too.”

None of these calls or outside perspectives made sense to me. I could only think, Where were these people all these years?

While I understood how some felt the need to comfort me, or to at least try to comfort me, my memories of the struggle — of the suffering — had closed me into a cocoon that couldn’t include anyone else. The only other person who could even begin to understand it was gone, and we (he and I) knew he was leaving, and how he was leaving, and when he would likely go, so…

What were these people talking about?

And All This Is Normal

In their article “Bereavement After Caregiving,” Doctors Schulz, Hebert, and Boerner recount the difficulties caretakers often face as their loved ones approach and succumb to death including increased risk of chronic physical and mental illness and increased risk of financial strain. The five stages of grief comprise only one aspect of caretakers' grieving process since there is not only the grief of loss, but also the grief of gradually losing to manage. The two types of grief are different.

Now, Three Years Later…

I can’t say that I am grieving my first husband’s loss any differently. While I understand the intentions of those who suggest he might be “Looking down on me, smiling,” or “Watching over his son and me,” I hope he’s not. I hope that the three years he’s been gone passed by like two minutes in a 100 meter dash. The thing he missed most of all in increasing sickness was running, so he’d better not be watching me. By God, after all that we went through, may he run, and run, and run, and not faint.

Second Chance

A Celebration of Second Chances and New Starts

TDO Timothy

Written by

Second Chance

Second Chance stories are what happen when life’s twists and turns create opportunities for positive growth and change.

TDO Timothy

Written by

Second Chance

Second Chance stories are what happen when life’s twists and turns create opportunities for positive growth and change.

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