Blog Category: Better Than Before

A daughter's perspective on caregiving in honor of Mother's Day
By Jane Wilkens Michael | Posted May 10, 2013
Mom and daughter relationship.
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A letter came through my website just the other day that was so touching, with Mother’s Day right around the corner, I decided to devote an entire post to it. Here it is, in part:

“Dear Jane,” it began, “I am attempting to deal with the recent death of my mother. She lived a long life but was extremely ill at the end. I am heartbroken. Maybe I should have done more for her. My emotions have run from fear, to denial, anger, anxiety and depression. My mother was pain-free but still aware that there was no hope left for her. I am beginning to feel that there isn’t any hope for me, either, to survive this. What can I do, if anything, to try to become Better Than Before?” Signed: Karen from New York.

Karen, please know that you are not alone. For no matter how old, how sick or for how long, it is beyond devastating to lose your mother. They are our cushions against eternity. I wish I had an easy answer, but I don’t. There is no right way to deal with loss. I will, though, share with you two stories that may help with your grief, starting with my own.

My mother, Emily, who I have referred to many times in my writings, went through a very prolonged illness and eventual painful (for me) drawn-out death. She had Alzheimer’s, the last illness from which I had thought someone so very beautiful and accomplished would ever suffer. She was, after all, an acclaimed author, syndicated beauty columnist, Coty Award-winning fashion designer, and a founder, director and trustee of the prestigious Fashion Institute of Technology in New York City. How could this have happened to her? And the question that haunted me the most, the one I had to constantly fight off, was: How could this happen to me? After all, it wasn’t about me, it was about her.

I wish I could have been more like Rita Hayworth’s daughter Yasmin Aga Khan, who took her mother into her own home and cared for her until the day she died. I couldn’t do that for my mother. It upset me intensely when I ultimately had to put her into a nursing care facility. I had no other alternative. She wandered. And many times it took us hours to find her. Her doorman said she was going to the ‘hairdresser.’ Now that would be a typical Emily outing. But at 4 a.m.? Happily, the home didn’t bother her because she really didn’t know where she was. She actually assumed she was in a resort on the coast of France or Italy, always telling her fellow residents to meet her by the piano bar at 6, or that blue was “their color.” Thankfully, she was oblivious to the fact that her compliments and invites were always met with blank stares.

To retain my own sanity, I tried to find humor through it all. Like the time the librarian called to see if she could return the book she had somehow taken out. “I’m sorry,” I told the surly woman, “but Miss Wilkens happens to be in a coma right now and can’t come to the phone.”

“I’ll hold,” she snapped.

I was also perplexed at the fact that they had bingo on the dementia floor. How on earth could anyone remember the call numbers? “B what?  B what?” I envisioned them saying. “Well,” the Social Director chirped in response to my bemused inquiry. “I like to refer to it as free association. We tell them, for instance, that their tumor is B-9.” I mean, you sort of have to laugh, right?

I clearly remember the time I came to visit her right from the gym. I wasn’t wearing any makeup and my hair was pulled back into a pony tail. “Emily,” said the nurse, “your daughter is here to see you.“ My mother stared at me for the longest time and then adamantly announced: “That is NOT my daughter.” When the nurse insisted that, in fact, I was; she looked me over from head to toe. “I would never have a daughter so plain looking,” she sighed. (Thanks Mom!)

When she was about to die—mind you it took many, many, months of anguish for me—she held my hand tightly in hers and, in a moment of rare clarity, said with tears welling up in her eyes. “The one thing I regret most in life was not spending enough time with my children.”

Suffice it to say, when I went home that night, I held my own three children especially close. I had her to thank for arranging to spend as much time with them as I could as they were growing up, putting my career second.

I also wanted to share my friend Pat Brody’s experience dealing with her mother’s death.

“There was a time, not so long ago,” she began, “when doctors—and the public alike—believed that we should not tell or discuss a terminal prognosis with a patient. Housewife alcoholism, nervous breakdowns, ethnic prejudice, serious depressions, and suicidal behaviors were also not spoken about out loud. “

Pat’s family secret began in 1972 while she was still in college after her mother’s surgery for breast cancer that had included an immediate mastectomy. “That night, I went and told my still sleepy mom that she no longer had her left breast. But all—family members and professionals alike—agreed that she was not to know of her terminal cancer. Our doctor also counseled that my dad, who had severe cardiac disease, should also not be informed about my mother’s terminal diagnosis.” Thus, the various deceptions played out unencumbered, even as her mother’s hair fell out and pain, weakness and nightmares moved in.

An epiphany came one night as Pat turned on a talk show to hear Dr. Rollo May, a noted psychoanalyst and author, who spoke about personal responsibility and truth. According to Pat, he told of his own battles with tuberculosis, an incurable disease when he had it in the early 1930s. He lay dying in a sanatorium while hushed staff whispered around him. Eventually, he discovered his diagnosis, and, though terrified, he felt there was tremendous meaning and importance in that sudden awareness. He had a choice: to die quietly or to muster whatever he could to support and assist in his own care. He recovered. His life was his own, a ship he had the right to command.

“What wonderful, courageous, and yet foreign ideas those were,” Pat had thought. “But what to do with them?” Then, about five months after the surgery and the devastating effects of radiation treatments started to ease, her mother finally said the word ‘cancer.’ “Suddenly we were on the same page,” Pat recalls. “We both were coming out from a life of silence and talking more and more about our own truths. Yet over and over, I was cautioned by all involved not to say too much to my mother as it might precipitate her death. How wrong they were! My mother became more alive and aware as she struggled to look her own illness in the face.” Yet, as her nightmares ended, Pat’s now began.

Fast forward many months later when her mother and father came to visit her. “I was about to become the daughter about to lose her now-peaceful mother. She had been a petite woman all her life, but at that moment, even with her thinning hair, hoarse voice, and shrinking body, she stood tall and wise and whole as she rocked and comforted me. I sobbed on the floor with my head in her lap. During that afternoon, she held me, and tried to help me understand some of the “whys” of her life. The drinking, her depression, and how it felt to die.”

Crying and shaking as she unveiled all her terror and inability to handle what was coming, “I saw that I finally had a mom, but now I couldn’t let her go. I needed her.”

Three weeks after her death, Pat, now a psychotherapist herself, was asked by the Yale School of Medicine to participate in a workshop where family members spoke with an audience of professionals who worked with the sick and dying. It was the dawning of the Hospice movement in America, and people were trying to understand this important transitional time in a person’s life. “I felt desperate that they hear me and the others who were struggling with matters of grief and dying. When asked if I had any regrets, I told the audience, yes. I deeply regretted that I was not there at the moment of my mother’s death. Sadly, I felt she had died alone.”

After the meeting was over, a woman came over and took Pat’s hands. “I am dying of cancer, and I want you to know that your mother did not die alone,” she told her. And then she thanked her.

“This I now know,” Pat concludes. “The moment of death is not important. It is our genuine presence with others during the process of their dying that is so deeply crucial. We must allow pain and then find the courage to risk connecting and losing, and hurting, and caring. We must be present with those we love. And then, finally… we must love them enough to let them go.”

So to you my Emily, my beloved Mommy, Happy Mother’s Day! I did love you enough to let you go. But you didn’t go very far. You continue to empower and inspire me every day of my life. And we have become one force in our battle to help others become Better Than Before. Oh, and yes, I blew out my hair this morning.

 

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