NAVIGATING THE TIGHTROPE OF AGING
Coming to terms with a parent’s decline is a challenging process fraught with denial
My mother didn’t want to be a burden and that was a burden. My mother’s words sounded harsh — “I never want to live with either of my girls” — but I didn’t take offence. It was her way of saying she never wanted to be dependent on us, or anyone.
The last five years of my mother’s life, when she declined both mentally and physically, were difficult. This fiercely independent woman needed assistance, and both my sister Barbara and I rearranged our lives to make sure she got it. Paradoxically, whatever burden there was in caring for her came not from her need for help but from her heels-dugin resistance to accepting it and my own resistance to usurping her autonomy.
Desperate to stay in her Florida condominium where she had lived for 35 years, my mother pretended to be doing well on her own. She never told me that a neighbour was bringing her dinner several times a week or that she had stopped going to her book club. I pretended, too — telling her I was coming to visit because of a business meeting nearby when really I just wanted to check on her, then going on to accept her well-being at face value, even as she edged into her late 80s. Eventually, as Mom approached 90, her best friend wrote to me and made me face the truth. My mother could not live on her own forever, and it wasn’t fair or even possible to expect her friends to step in. She would need to move somewhere closer to either Barbara or me.
“I’m too old to start over somewhere new,” Mom said. My mother’s condo and the surrounding community had become a comfortable cocoon. She couldn’t seem to understand that staying there would have been a true burden on Barbara and me; that in case of a fall or some other health crisis, one of us would have to fly in, leaving our own families and work.
My insistence that we preserve Mom’s autonomy for her sake, not ours — so that she would not feel like a burden — only made things worse. I refused to acknowledge that her overwhelming sadness and fear made it impossible for her to assess the situation clearly. I prolonged everyone’s agony by exploring unrealistic options in my desire to let her have her way.
My mother’s friend again provided the necessary dose of reality. “You and Barbara will have to make this decision,” she wrote. With a mixture of relief and sadness, we chose Mom’s new home — an “independent” apartment in an adult congregate living facility near Barbara’s house in North Carolina.
Mom immediately loved her North Carolina home. She made friends and joined all the activities offered. Our new normal lasted about a year, until she fell and cut her arm. The deep wound required surgery and a two-day hospital stay, and it heralded a steeper curve of decline. Her reflexes slowed, and simple tasks of daily living grew perilous. She resisted every accommodation — the Medical Alert lanyard I installed over her objections, the walker she needed to stay upright, and the home health aide to assist with showering and dressing.
Although Mom consented to some assistance and was always delighted with the way it improved her quality of life, her resistance to additional care never lessened. She refused an evening home health aide, and, as usual, we were reluctant to force the issue. The result was every adult child’s nightmare: Mom fell before getting into bed and lay on the floor, bruised and disoriented, until morning. She spent eight days in the hospital and eight weeks in in-patient rehabilitation.
Barbara and I had learned our lesson. We presented Mom’s next move, to the memory unit at the assisted living facility across the parking lot from her apartment, as “what everyone, including your doctor, thinks is best.” We decorated the room with her favourite things, and breathed a sigh of relief when she declared it “lovely.” Six months later, with us by her, she died right there in her own bed.
If I could do it over again, there are things I would do differently.
First, I would pay better attention to the signs that my mother needed help as she got older. I would see that her ability to manage alone in her condo did not mean that she could thrive there.
Second, I would be more realistic about the overall trajectory and consequences of aging. I had worked with hospices. I had studied aging and illness. I knew my mother would decline both physically and mentally. Still, the longer she seemed to do well, the easier it was to engage in magical thinking.
Finally, I would talk to her about a plan for her future long before either of us felt it was time. I now know that when everyone is ready to talk, it’s already too late.
Barbara and I each have our own ideas about what did and didn’t constitute a burden during my mother’s years on what I call the tightrope of aging — the stage between active independent living and end-of-life. What I do know is that given all our frailties as human beings, Barbara and I did the best we could — and so did Mom.