Challenges of Being a Family Caregiver

On my occasional weekends away from home, I missed my view of the Hudson River, the varying shades and moods of the water outside my window.

I missed my home, the rootedness it provided in those unsettling times.

I even missed my cats.

What I did not miss, I’m ashamed to say, was my mother. She joined our household following a major surgery for ovarian cancer. Like the cats, she greeted me with sweet joy and anticipation whether I was gone for an hour or a few days.

As soon as she heard the cowbells jingle on the back door, she acknowledged my arrival with a combo “yoo whoo hoo,” and I was trapped. The clock started and I was back to being a family caregiver on the job. What was to miss?

Lisa Kosan and her mother

A Too-Brief Respite

I faced this discomfiting truth after my husband and I had been away two weekends in a row, first to a wedding on Cape Cod and then to move our second son in at college. Though they entailed long car rides and dreaded baggage carousels, our trips also broke up demanding work weeks and the strain of being on call.

“I missed you,” my mother said from her corner of the couch in the same soft voice she asked for her nightly cup of tea with sugar and milk, and two Vienna Fingers.

I didn’t miss her. I’d barely been gone for 27 hours.

I knew that at that moment I had to say something real and true. So, I said, “That’s nice of you to say, Mom,” and I slid into the kitchen for safety. My stomach clenched as I gazed at the moon over my neighbor’s house.

The Plague of Guilt Caring for an Aging Parent

What was my problem? I was not the first daughter in the sandwich generation to become a stressed-out, live-in nurse. Do the right thing. She’s your mother, for heaven’s sake.

I went back into the den, told my mom I missed her, too, then I hugged her, kissed her goodnight and went to bed.

The day after I fumbled with my guilt I needed to know what compelled my mother to tell me she missed me. So I asked.

“Because you’re my whole world,” she said. “Like it or not, that’s the way it is.” She held her hand in the air to emphasize her point, not quite able to make a fist with her weakened fingers. “I tell the truth.”

I smiled through my tears, bent over to gather her bird-like frame on the couch, and gave her a delicate hug. She was right about her world in one narrow respect: I was her constant when there were so many variables.

Thank goodness, she would say, for the dear friends who visit and call, email and write letters. What would she do without her granddaughters, who would come over to chat and rest their heads on her shoulder? And of course, my sister, who would stay over on my weekend getaways and make sure everything was as it should be.

Nearing the End

My mother grew weaker from the cancer after she moved in, and we knew her stay with us was finite. Eventually, a hospice nurse visited once a week, sometimes more. There was a booklet on my desk titled When Death Is Near.

Not so long ago, my mother and I lived hundreds of miles apart and spoke at least weekly about our fluctuating weight, sports, her work as a docent at the Whitney Museum, my job at an art museum, what we made for dinner, her watercolor classes, politics, movies, travel. Everything. And nothing.

Later, we still talked about many of the same things but in less detail and in shorter sentences. And the patterns were familiar — we reviewed what day it was, what the cats were destroying in the next room, whether the mail had come.

But much of the time in those waning days was spent reading or sitting silently side by side, my mother napping and me mentally wrangling the list of things I needed to be doing and places I wanted to be going while trying to be quiet.

People who have cared for loved ones always told me it takes time to miss the healthy, vital person who dies, the person you enjoyed talking to and doing things with, not the needy or sometimes unknowing imposter. You don’t miss being a family caregiver, you miss being a friend, wife or daughter.

What I Would Not Miss

Toward the end, I knew I wouldn’t miss wondering if my mother was going to wake up in the morning. I wouldn’t miss fretting over the minuscule serving of cottage cheese that was her lunch. I wouldn’t miss debating whether she’d be happier ending it all rather than living in a constantly diminishing state of energy and appetite.

And I didn’t miss her then, after an hour or a day away, because we were both trapped. We were waiting for the inevitable moment when she had to leave and I had to face another horrible fact — that I would miss her more than I could bear.

I didn’t miss my mother because I think I was waiting for her to die. I was waiting for when she wouldn’t be here when I have an accomplishment to share, or a Linzer tart for her to taste or an article about a new Picasso exhibition that she’d like to read. Or when the Giants are playing football and she won’t be cheering from the couch. Or showing me her latest pencil drawing or commenting on how beautiful the sunset is or the delicate shade of pink of the tips of the yellow Peace rose. Or grabbing me, dancing down the hallway and nuzzling my neck until we both shriek with laughter.

I would miss my mother. I just didn’t want that awful day to come. But it did.

Need Support Being a Family Caregiver?

Caring for a loved one at the end of their life can be a challenge, but it is a rewarding task. At Bethesda, we understand how important it is for caregivers to get the support they need.

That’s why we offer a range of services like Care Management and Home Health services to assist you in providing your loved one the best possible care. If you or your loved one are struggling to take care of an older adult, contact us today to learn more about how Bethesda can help.

By Lisa Kosan for Next Avenue.

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