Posts Tagged 'caretaker guilt'

Flashback: Of Grief and Relief

I originally wrote this post on January 2, 2010. It’s one of several unpublished posts I wrote in the wake of Gadget’s death. I keep finding these drafts that are basically finished, but for some reason, I didn’t think they were complete at the time. My thinking was so fuzzy back then, I’m not sure what I thought these posts needed.

In this case, the original title, “Admission of Guilt,” suggests a pretty clear reason why I hesitated to post it. I’m glad that I can now grieve Gadget without feeling guilty about the complex feelings I experienced during his last days.

– SW

When the End of the End Doesn’t End

Gadget’s final week was an extension of the previous six months, and the dreams seem to be an extension of what I lived in those end days.

For about four months I fought with my brain, my body, my heart, and my bank account to defeat his cancer. I researched. I cooked. I researched more. I took him for chemotherapy, acupuncture, chiropractic, and Chinese herbs. I pilled him constantly and myself just enough to keep my exhaustion and pain sufficiently at bay to always take him for a walk, to always go with him to chemo, to always make sure he got the right supplements and medications with the right meals. Those were the days of hope, when I thought we would have at least a year, possibly two, maybe three or more.

Then, he took a turn for the worse, and I realized he probably was dying. Next were the weeks it was clear to me he was dying, but not to him. Finally, in the last week or two, he was actively dying, which was like all the months before, but brutally amplified.

Everything was more. More stress and anxiety. More effort to ensure each meal was delicious and totally digestible. More pinnacles of hope and plummets into despair. More pills and monitoring symptoms and needle sticks — all requiring more vigilance around and around and around the clock. More cleaning up messes that smelled of his body shutting down. More desperation to make him as happy as I could with trips to the pond, walks, doggy get-togethers, and to soak up as much joy as I could, myself, in his still being alive because every time we had fun or peace, I knew, “This might be our last time. . . Or this one. . . . Or this one. . . .”

I couldn’t shed months of habits overnight, just because there was no longer any purpose to them.

The first morning after Gadget’s death, I rolled out of bed, adrenaline banging through me, and began checking his status before I even realized he wasn’t there. I was ready: Had I heard gasping? Did I smell vomit? Was it time for pills or fluids?

What I was not ready for each morning was the nothing. Not only wasn’t he on his bed, he wasn’t lying in a cool spot next to the window or on the bathroom tile. He hadn’t wandered off in search of one of my personal care assistants to demand food and attention (not that much demanding had ever been involved — more like just showing up!). But, my PCAs hadn’t arrived yet because I should still have been asleep. There was nobody there. So there was nothing to be done. And I didn’t know what to do with that at all, because for six months, there was always more to do. More to try, more than I could do, more that made no difference in the end.

After taking in the nothing, I’d cry and go back to sleep.

Sleep was very big on my agenda the first few days after Gadget died because, in addition to the insomnia I have as a symptom of my illness, for the previous months, I woke up constantly to care for Gadget. During the days, I spent all my energy on two things: Gadget’s survival, and my survival (in that order). From the moment I woke to the moment I’d literally pass out from exhaustion, I was in the survival struggle.

In fact, for the first 48 hours after Gadget died, I mostly felt relief. I slept. I finally didn’t have to manage anything. I didn’t have to struggle against and fear the worst anymore because the worst had already happened.

Gadget napping on red quilt on couch.
Near the end, we both grabbed sleep whenever we could.

I’m fortunate to be able to admit this. What’s given me the courage is hearing it from other caretakers of a loved one with a long, terminal illness. It’s actually pretty common. However, it’s not an admission everyone wants to hear.

A year ago, I didn’t want to hear it from someone else. On January 6, 2008, Norm, one of my best friends, died after two agonizing years of illness. He often said to me, especially near the end, that he wanted it to be over, that he sometimes felt like it would be a relief to die. This was hard to hear, but I was sympathetic. This was because, along with understanding how it feels to be mired in pain and illness, I was keeping a promise I’d made to him a long time before, though he didn’t know it.

When Norm got sick, I committed to listening to and supporting whatever he felt. My goal was to be unconditionally loving and nonjudgemental. I think it’s the only time in my life I’ve succeeded at that.

Still, I didn’t want him to die. So, when he did, I was shocked and grief-stricken. It was a pure loss, which is what animal bereavement experts say is usually the case when a companion animal dies. They say that our relationships with our animals are usually so entirely positive, without the resentments, grievances, and other negative complications of our human relationships, that the loss is often more painful than a person’s death. I have recently heard from others whose dogs died of cancer that their grief and suffering is worse than when they’d lost a parent, a sibling, or even a child.

Norm was a dog person. He also shared my gallows sense of humor. At his memorial, I said that Norm would appreciate knowing that, to me, his death was as upsetting as if he was a dog.

This was not true for his wife, who also is disabled and with whom I was also friends (though not as close). His death was a terrible loss and a tragedy for both of us, but she had spent two years of physical and emotional agony taking care of him. I was protected by the distance of the phone line. His death for me was pure sadness. For her, it was also a deliverance: a release from the horrors of watching him suffer brutally for so long, as well as a chance to take care of herself again and to regain some of the life she’d lost before he got sick. I couldn’t stand hearing this from her. Her grief was complicated, and mine was straightforward. I didn’t want there to be an “upside” to my friend’s death.

Since Gadget’s death, I have a lot more empathy for what my friend was feeling last year. I have been met with silence, confusion, and outright denials when I mention the part clemency has played in Gadget’s death.

When he was dying, I went to an online anticipatory grief support group. When I admitted, with some guilt, “Part of me just wants it to be over.”

The host said, “That’s because you don’t want to see him suffer. It’s a completely unselfish feeling.”

I said, no, it wasn’t entirely unselfish. Seeing him suffer was horrible, and that was certainly part of it. But, I said, I was suffering too. I was exhausted, a physical and emotional wreck. I’d dug deeply into savings that I live on. The toll was enormous and seemingly endless. I wanted it to be over for me, too. I didn’t want him to be dead — not truly dead — but I also wanted it to be over.

The host continued to maintain that my only thoughts were of Gadget’s needs. She refused to hear the part of me that was saying, “I can’t take this anymore.” I didn’t mention it again.

Of course, when it was “over” — what we think of as over, his body buried in the ground — it was not, is still not, remotely over. I got my two nights of sleep, but they were laced with nightmares for far longer. And the grief, in one form or another, goes on and on. I’ve been told that in some ways, it will never be over, a thought that is depressing, exhausting, and strangely comforting. I guess because it means Gadget will always be in my life, in some form, even when that’s only in grief. . . .

I reach out for him to feel where his fur should be. I look to the foot of the bed, where his head should be lolling over the side. I listen for his snore, rumbling over the white noise of the air filter. I glance instinctively to the door, the light switch, the pillow I’ve dropped on the floor, for him to shut the door, turn off the light, pass me the pillow.

Gadget at a distance in a large pond.
At times, he feels beyond my mind’s reach.

For six months, I applied every life-affirming “treatment” I could. I didn’t just take him to chemotherapy every week, even when I could barely leave my bed the rest of the time. I didn’t only research and dispense herbs and supplements, create a special cancer-fighting diet tailored to his food allergies, consult a multitude of veterinarians and read multiple books on canine cancer. I took him on special walks — varied our routes, went to his favorite destinations (and pretty well killed my powerchair in the process). Even teaching him new service skills and relying more on his assistance felt like a blow against cancer, as if I was tethering him to life that much more tightly. How could such a necessary bond ever be broken?

More importantly, I tell myself that I still exist and matter. After more than eight years living as a “we,” a partner, an interdependent unit, an extension of another, I’ve become disembodied. The only thing that has ever been mine alone is writing. No matter how many people offer critique, proof or edit, type or transcribe, publish (or reject) a piece of writing, it is still a solitary act.

I was a writer before Gadget. After he entered my life, I often wrote to escape the demands of his training and exhausting exuberance. As the subject of some of my humor columns, I transformed scary, frustrating, or painful events with a wild young rescue into emotional release — and paychecks. Even when he curled up under my desk as I typed, the true connections happened in my mind. Writing has always been where I find myself, whether I want to or not.

– Sharon, the muse of Gadget, in the days before Barnum


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