The grief, guilt and joy of being a caregiver for my mom

As much as I may have resented it, cursed it, allowed myself to become embittered at times, I did what I chose to do. And I would do it all over again.

An illustration of a mother and daughter sitting on a park bench from behind, with trees and flowers surrounding them.
(Beya Rebaï for The Washington Post)
6 min

I was my mother’s primary caregiver in the final three years of her life, as she struggled with dementia and the physical and emotional tortures that visit the afflicted.

If I am to be honest, I did it out of a sense of duty but not always joy or love.

I spent three or four days a week with her, including every weekend, not because anyone told me I needed to, but because I was the woman she had raised: the good Irish Catholic daughter of immigrants who never stopped craving her mother’s approval and affection. But during those three years, there were times when I would have sold my soul to not visit her, struggle with the wheelchair as we went for a drive, cajole her to eat and talk (endlessly) about the weather.

There were times when her eloquence about her condition moved me to tears, including when she told a neurologist that it “felt like my mind is shrinking in my head, doctor.” There were times when she would talk about “praying to God to just make me stronger.” And toward the end, there were times when she would say she just wanted to die.

I have never felt more helpless, searching for answers that would bring her some measure of joy, of comfort, of peace in a dynamic that was endlessly changing but inexorably heading toward a known conclusion.

That conclusion came March 1 when my mom died. I hope it was the blessing for her that I imagine it to be.

On the days when I’m a believer, I can imagine her reunited with my dad, her parents, her siblings and even my own husband. I can see her dancing, laughing and chiding, bringing her unique style to the Pearly Gates: “St. Peter, have you thought about changing out the drapes for window shades?”

On the days when I’m not a believer, I console myself with the knowledge that she is at least free. Free of the anguish that tormented her as her mind was stolen from her; free of the physical pain and infirmity that had marked those last years, months and days.

In those days before her demise — both the believer and nonbeliever days — I had prayed for her death. For her, yes. But, shamefully, for me, too.

The last good afternoon

Mom fell in her assisted living apartment on a Saturday, just hours after I had taken her to lunch at her favorite restaurant and we had sat by the fire in the common area and chatted with other residents. By the massively diminished standards she lived by, it had been a good afternoon. The last good afternoon.

We would spend hours in an emergency room before getting the dreaded diagnosis: broken hip. We had multiple conversations with doctors about treatment. She needed surgery they said at the same time they warned that survival beyond a few months in someone her age, with her underlying conditions was unlikely. “Why,” I asked, “should I put her through surgery?”

The answers that came back were disparate and betrayed how even well-trained, caring doctors (which all of them were) struggle to deal with end-of-life issues.

The cardiologist seemed to indicate that while she could tolerate surgery, he, too, was unsure of the end goal. The hospitalist (a reasonably new specialty that I had not heard called this before) made the most compelling argument that without surgery any movement for however long she lived would be excruciating.

The surgeon, not surprisingly, looked at me as if I were insane. Surgeons operate; they fix things — or they delude themselves into thinking they are fixing things.

In the end, Mom had the surgery, but when she nearly choked to death two days later because she couldn’t remember how to chew, I asked to see the palliative care doctors: Hospice was the only route left.

The hospice team at the hospital, in the county where Mom lived, and at her assisted living were phenomenal. And my being able to bring Mom back to her beautiful apartment, surrounded by a lifetime of carefully chosen mementos, was a gift to both of us.

A peaceful last hour

She lived for six weeks, eating next to nothing. In her last cogent conversation with me, I told her: “Mom, I just want you to know how much I love you.” And her reply, fully my mom, was: “Will you shut the hell up? I’m tired of hearing you say you love me, when you won’t kill me.”

She was ready. I was ready. And for six weeks, I sat with her, trying to calm her as she clearly hallucinated seeing dead people. Praying for her to die. Begging God to take her. Believing there was no God because how could a loving God allow her last days to play out this way? Thinking “What would be the harm?” in advancing the inevitable. And forcing myself to get up and go for a walk when the voice in my head asking that question became too loud.

In the end, Mom died in my arms, listening to music from the playlist I had made for her early in the pandemic. The last hour was incredibly peaceful, and it allowed me to forgive God some of the previous six weeks — and three years. I said some things that needed to be said and hoped she heard me.

The visceral reality of grief

But now, almost two months after her death, what I feel is not the relief I had anticipated. I go to the grocery store and have to remind myself not to buy bananas for her. Alexa, the voice assistant, still reminds me that I might want to order again the jellied fruit candy that she loved so much.

I feel adrift, untethered, without my mom to care for. As much as I resented the role of caregiver at times, I can’t help but think she would love to feel the warmth of the spring sun on her face; I can’t help but wish that we could go for one more trip to see the tulips at Brookside Gardens.

As much as I may have resented it, cursed it, allowed myself to become embittered at times, I did what I chose to do. And I would do it all over again, because sometimes, in the last three years, I made my mom laugh. Sometimes we sang a mean duet to one of those tunes on the playlist. Sometimes she admitted that she needed help and let me be the person who helped her.

And that’s the thing about grief and loss. They pay no heed to logic or reason. The rational statement: “Mom is at peace” can be absolutely true and completely irrelevant when juxtaposed against the visceral reality of grief.

I miss my mom.

Tracy Grant is editor in chief of Encyclopaedia Britannica. She is a former managing editor of The Washington Post.

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