Caregiving: A Burden So Heavy, Until It’s Gone

A heart-warming story published in the New York Times, written by Margaret Renkle, who is the editor of Chapter16.org, a literary publication of Humanities Tennessee.

“Marry an orphan, ” my mother used to say, ” and you can always come home for Christmas.”  What she should have said was “Marry an orphan, or you’ll have four parents to nurse through every torment life doles out on the long, long path to the grave.”

As it happens, I married the opposite of an orphan, a man whose relatives live deep into old age despite diseases that commonly fell others:  cancer, sepsis, heart failure, emphysema.  My husband’s elders get sick, and then they get sicker, but somehow they persevere.

My own father died of cancer five days shy of his 75th birthday.  Mom dropped dead of a cerebral hemorrhage at 80.  When I checked on her the night before her death, she was eating a cookie and watching a rerun of “JAG.”  I almost pointed out that eating in bed is a choking hazard, but for once I let it go. I take some comfort now in knowing I skipped that one last chance to boss her around.

There’s an art to helping people without making them feel bad about needing help, an art I hadn’t wholly mastered with Mom.  “I would’ve died if my mother had done this to me when I was your age, ” she said when she moved in next door.  But by the time she actually died three years later, we had both adjusted.

But as close as we were I found myself despairing her long-lived genes.  My great grandmother lived to be 96; my grandmother lived to 97.  I knew my kids would one day leave for lives of their own, but Mom’s needs would just keep growing.  By the time, my nest was truly empty, I thought, there would be precious little left of me.

When she died so suddenly, I felt as if a madman had blown a hole through my own heart.  Unmoored, I could not stop weeping.  Caring for elders is like parenting toddlers–there’s a scan running in the background of every thought and every act, tuned to possible trouble.  And there’s no way to shut it down when the worst trouble comes.

A year later, my husband’s parents moved across several state lines to an assisted living facility five minutes from our house.  Physically frail, he from heart failure, she from Parkinson’s–they needed far more help than my mother ever did, but I figured their new living arrangements would surely make up the different.  After cooking for my Mom, cleaning her house, driving her to appointments, managing her meds, paying her bills and washing her clothes, I looked forward to having parents nearby who needed only our company. The lesson I learned from taking care of my own parents is that the end of caregiving isn’t freedom, it’s grief.

My own mother could not afford assisted living, and we always understood that one day she would move in with us.  But once my mother-in-law entered hospice care, it broke my heart to imagine by beloved father-in-law living alone in that assisted living apartment after 60 years of happy marriage.

“But your dad would be lonely here, too,” I said to my husband.  “If he moves in with us, I’d have to rent an apartment.  Wouldn’t it be better if he stayed in assisted living, where there are people around all day, and came over here with supper every night the way Mom did?” My husband looked at me, “You mean an office, right?” he finally said.  If Dad moves in you’d need to rent an office?” I laughed.  I meant an office, but for a moment he wasn’t absolutely sure.  In the end, my father-in-law stayed put at the assisted living facility.

Last winter we lost my beautiful mother-in-law, too.  Not a day goes by when I don’t miss her, in many of the ways that I desperately miss my own mother and father.  They are all an absence made palpably present, as though their most vivid traits–my father’s unshakable optimism; my mother’s irreverent wit; my mother-in-law’s profound gentleness–have formed a thin membrane between me and the world:  Because they are gone, I see everything differently.

As ruthless and exhausting as this latest round of caregiving has been, I know I’m lucky to have one beloved elder still left in this world.  And I plan to give him all the tenderness and love I would shower on the others, if I could only have them back again.

 

 

 

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