First Person / Caregiving for parents is about fear and strength
Shaking at the end of the pier
September 21, 2013 7:15 PM
By Ronna L. Edelstein
When I was 6, my family and I spent a week in Atlantic City. I loved the Boardwalk with its saltwater-taffy aroma and colorful sights, but I feared the pier that jutted far out into the Atlantic.
One moonless night, my older brother bet me a bag of taffy that I couldn't walk to the pier's end by myself. Never one to back down, I accepted his bet. But the farther out I walked, the more frightened I got. It felt like one more step would send me off the pier's edge and into the bottomless black water. My parents rescued me by dashing to the end of the pier and carrying me back to safety.
I lived the next half-century living under two illusions: one, that nothing in my life would ever be as scary as that dark pier, and two, that my parents would always be there to save me.
Then, 10 years ago, I tumbled into a topsy-turvy world. My eyes finally saw what my heart had fought to acknowledge: Ma was losing her mental edge. No longer was she the formidable woman who kept a spotless house and worked at a children's furniture store. And on our long walks, Dad was leaning more and more on his cane and my arm for support.
My parents, once my constant caregivers, now needed me to be theirs.
As a result, I have spent the past decade feeling as if I'm once again tottering at the end of the pier -- this time with no rescue in sight. To make room for Ma and her dementia and Dad and his aging, I relinquished the starring role in my own life, feeling that as they had so generously given to me, I should give to them.
One lesson I quickly learned is that caregiving is a harsh teacher. My new role forced me to make difficult decisions: placing Ma in an assisted-living facility, giving up my apartment to move in with Dad. It continues to force me to be a "caretaker" -- one whose act of caring takes away my parents' independence and dignity. I had to become the parent as first Mom and now Dad returned to the neediness of childhood.
My caregiving for Ma ended in March 2007 when she died in my arms. A part of me rejoiced that she was finally at peace. Another part wondered if I could ever find peace, and whether I had done my very best for her.
This question -- doing my very best for a parent -- continues to haunt me. I try to do my best for my 97-year-old father, but no books, seminars or Internet sites can reassure me that it is OK to feel moments of impatience, frustration and even anger -- at the situation, not at the person. Family and friends urge me to spend more time doing things for myself, but that involves finding someone to be with Dad -- and results in my guilt and sadness that I am not the one by his side.
I have also discovered that 24/7 caregiving is a constant in a world noted for change. It demands that I constantly keep one eye on my book or the television and the other on Dad to make sure he is OK. It insists that I constantly listen at night for any abnormal sounds emanating from Dad's room.
Most of all, caregiving means that I constantly live with fear -- the fear that the situation will deteriorate and I will have to break my "no nursing home" promise to Dad; the fear that I will decline and no longer be able to give care; and the worst fear of all -- that I will one day have no one to care for.
Caregiving has made me re-evaluate what makes a good day. I now define a good day as one in which the unexpected does not occur -- no low blood sugar attacks, no ambulance trips to the ER. It is a day when I can keep my anxiety to a minimum and have faith that Dad will maintain his cognitive skills, that he will retain the vision to read, and that he will always recognize me as the daughter who loves him "the mostest."
So why have I taken on this physically and emotionally draining job? It is not because I am innately good, as someone living in my co-op recently said: "You must be a good person; I see how you care for your dad." It is also not because I feel an obligation to follow the "Honor thy father and mother" commandment. It is not because it makes me feel altruistic, as the "giving" syllables suggest.
Instead, I choose to be Dad's caregiver because I am selfish. Caregiving lets me start every day by buying Dad a cup of coffee and muffin that he eats while I exercise at the gym, wheel him to the park or through the mall, and find him the perfect book to read. Giving Dad, who has always been there for me, a high quality of life, enriches my own life, even if I sometimes find myself shaking at the end of the pier.