I

’ve heard many painful things in the years I’ve been a caregiver.

“God. Dear God. Help me!”

That was my mother, writhing from trigeminal neuralgia, a condition that can feel like being attacked by a wrathful enemy armed with very sharp knives.

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Sometimes she went to the hospital for a shot of Demerol when the pain became unbearable. But that wasn’t always possible. Mostly, mom, who also struggled with multiple sclerosis, yelled it out. “Goddammit! Goddammit sonofabitch!”

It was pitiful, seeing her try to mobilize a pittance of fury to fight off the pain, weakened, in despair.

What does a caregiver do in these circumstances, when someone you care for is in extremis?

If you’re scared as hell — a natural response — you go quiet, maybe leave the room. If you stay, you try not to minimize their agony. It’s their right to have it acknowledged.

So, maybe you say, “I’m here. I’m with you. I’m staying with you. I’m not going away.”

Or maybe just “there, there,” as you would to a child. Or, “Hang on. We’re going to get you help” — if you think help is available.

Years later, I found myself attending to my sister in the early stages of frontotemporal dementia, another awful illness. When her symptoms couldn’t be ignored any longer, she called me often, asking, “Why is this happening to me? Why?”

I didn’t have an answer. I didn’t know what to say.

Why does devastating illness strike some and not others? Is there an adequate response to this existential cry of anguish from someone you love?

To me, this was worse than the physical pain I witnessed earlier in life. With my mother, medical care occasionally offered some relief. This, though, was a lacerating spiritual wound: a visceral sense of a great callous, cruel universe indifferent to justice, love, or mercy.

If I were a religious person, I might believe in a divine being tipping the scales in the other direction someday. But I’m an agnostic, one who doubts.

“I’m so sorry this is happening to you,” I told my sister.

And then, the next time she called asking “why,” I tried a variation: “It’s not fair. It’s not right. You don’t deserve this.”

And then, the next time, something along the lines of: “I wish this wasn’t happening.”

Did any of this lessen the sting of that spiritual wound both she and I felt? I doubt it.

Did it make a difference that she knew her question would be listened to — and taken seriously — by someone who loved her?

Perhaps. I don’t kid myself.

Clearly, temperament plays a part in how people handle these terrible diseases. Some are naturally cheerful, optimistic, calm. You probably won’t get a sense from them that the fundamental fabric of the universe is being ripped apart before their — and your — eyes.

Others are worriers — anxious, pessimistic, like my family members. With them, the journey of illness may be a very dark one. What do we say when their anguish spills over and they cry out? Does being a caregiver require being a witness to these searing experiences?

Much of the time, yes.

But people don’t speak of this openly. And the shock of witnessing such suffering is compounded by that silence.

For me, a sense of profound isolation eased when I came upon an essay by author Ken Wilber, “On Being A Support Person.” In it, Wilber describes grappling with powerful negative feelings as he cared for his wife, Treya, who had cancer.

Anger. Irritation. Frustration. A desire to run away. An impulse to lash out. The torment of helplessness.

As a caregiver, I’d struggled with these emotions as well, with a sharp sense of shame.

It took Wilber years to understand that his responses were a distraction — a way of avoiding Treya’s fear and sadness as well as his own. He was flailing, like a man who swims out to help someone who’s drowning and finds himself sinking, too, with the victim’s arms locked around his neck.

Eventually, he realized the only way forward was to accept the vulnerability, the anguish, and the dread.

“The loved one facing a possibly lethal disease is going to experience an overwhelming number of extremely powerful emotions; on occasion they are going to be completely overwhelmed by those emotions, by fear, terror, anger, hysteria and pain,” Wilber wrote. “You job is to hold the loved one, be with her/him, and simply absorb as many of those emotions as you can.”

Admittedly, this is too much for some people.

It takes a lot to hang in there. I did it because the alternative — abandoning people I loved because I couldn’t tolerate their pain — was even worse.

My mom and sister are gone now, and I’ll never know if the words I spoke offered any consolation.

At the time it seemed to matter a lot. Now, not so much.  I’ve come to understand that words serve as a signal for intent, which is what really counts.

Did I let them know how much they meant to me?  Yes.

Did I offer comfort as best as I knew how?  Yes.

Was I always kind and compassionate?   No.

Did I like putting their needs before my own?  No.

That’s about as good as can be expected, I’ve realized. It’s an accounting I can live with.

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  • A touching and insightful description of the agony of life and death and the special burden borne by the ‘observer’. Although the article doesn’t touch on the need for physician assisted suicide, it supports the need for better control of human suffering. No one should have to live their last days in agony, and no one should have to stand by as helpless witnesses to the horror.

  • Judith, if it helps at all, I think almost anyone would agree you did everything you could for your loved ones. And, as someone with additional perspective, I think you did right, did well. I have post-herpetic neuralgia, and the pain can be literally unbearable at times, making me break down and just cry or moan in misery. I have not allowed anyone to be around me at these times, in part because I’m fearful of the dreaded “suggestions about how to fix it” response. In addition, I was caregiver to my grandmother as she entered the early stages of dementia, and she would ask me the same thing your sister asked you: “Why is this happening to me?” It was so hard and so heartbreaking. But I agree with you and others who have said you can only be there for your loved one and comfort them. I should not say “only.” To be there for another person and help lessen her pain is a great and wonderful and loving thing. I’m very sorry for your losses.

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