Changing the Future of All Minds

Forgiveness: A Relationship Transformed

BY ANNE VON OEHSEN/SUZY LAFORGE

“Please let me do it, so I can call it my own,” my mother spoke emphatically after I made the mistake of taking hold of her paintbrush.

Sitting at my kitchen table, she was putting the finishing touches on a painting of a cerulean blue butterfly as she studied a similar image on my iPad. It reminded me of something my daughter might have said to me. I tried to be supportive and encouraging about her colors and composition.

“I like your use of the green in the leaf against the blue butterfly,” I said, without trying to sound condescending. I could feel she appreciated this time together, something she had always yearned for.

This tender scene would have been hard for me to imagine just a few short years before. That day, she was deep in her dementia, and I knew that it was not unusual for those with Alzheimer’s to slowly regress. I was working on striking that delicate balance of maintaining her respect and dignity even as she acted more childlike. But what was most surprising about this scene was the contrast to our past relationship, which had been so complicated and tumultuous.

Growing up as the oldest of four siblings, I felt keenly resentful of her lack of attention. It felt like her focus was on what was going to make her happy—going back to school or a new career—but not necessarily her children. Our relationship continued a painful push-pull dance as an adult, each of us wanting something from the other we weren’t able or willing to give. She had an insatiable need for time and attention, and it seemed whatever I did give was never enough.

After moving to Houston from New York, my husband and I would use a major part of our precious two weeks of vacation time to visit our families in New York each year. As we left, instead of saying “Thank you for coming,” my mother would invariably ask, “So when are you coming back?” At family dinners when we were all together, we would take note of how quickly she would change the subject to be about her. Whether it was my daughter telling about her first day at camp or the latest play she was in, or my son talking about his lacrosse game, the conversation would turn into stories about how miserable she was at camp when she was just six, how she wrote and directed the Junior Show at college, or reciting a cheer from her cheerleading days. We’d all lock eyes with one another or kick each other under the table in recognition of her “all about her” stories, and smile. Despite knowing that her childhood with a depressed mother had contributed to her self- centeredness, I still longed for her to be a doting mother and grandmother.

In 2001, when she was recovering from small cell lung cancer, my father, who had been a successful marketing executive at an international pharmaceutical company, started showing signs of dementia after having a triple bypass. He was diagnosed with frontotemporal dementia (FTD), a type of dementia that affects executive function. A brilliant executive, he had now lost his ability to plan and organize. But, even more difficult to watch, he also was losing his social awareness and impulse control. In spite of diabetes and cardiac issues, he would think nothing of diving into a carton of ice cream any chance he had or cursing shamelessly. My parents’ money was running low, and neither of them was capable of paying their bills. When my husband, Bob, took over their finances long-distance, he realized we needed to step in before their money ran out. It turned out that they hadn’t been responsible in planning for retirement, so we encouraged them to move from New York to be closer to us in Houston. Between their health and financial issues, it was time to oversee their lives as well.

Initially, I had this fantasy that it would feel immensely gratifying to help “rescue” them, a fitting role as the eldest daughter. We didn’t believe we would have much time with them, given the seriousness of their illnesses, but even our good friends thought this would be the opportunity for me to reconcile my relationship with my mother.

We found an apartment for them just a few blocks away from our house and helped them get settled into their new lives as Texans, after more than seventy years of being New Yorkers. A few years later, when we helped our son settle in at college, it felt strangely similar. We introduced them to our church, which helped their adjustment. My mother quickly developed new friends and found volunteer opportunities. Like many baby boomers, I was living out the classic “sandwich generation” role with a fifteen-year old and seven-year old at home, working as a marketing consultant, and now, feeling responsible for my parents.

The first nine years challenged me in ways I could not have imagined. From monitoring their medications and worrying about their health, to managing their finances, we were now on the front lines of caregiving with siblings who lived far away. What proved most difficult, however, was watching my mother’s lack of attention to my father as he sunk into deeper dementia. It triggered my own memories of how she had always focused on herself, often to the neglect of her children.

One typically hot, humid summer day in Houston, my mother called, hysterical, and said, “Your father is missing and I can’t
find him!” We called the police, and then each of us headed out, searching streets and his favorite haunts—including the nearby
Ben and Jerry’sTM ice cream store. There was no sign of him. After a frantic few hours, someone from his favorite train store, Papa Ben’s, called to say my father was there—a mile away. He had fallen in the middle of one of Houston’s busiest streets, and a kind stranger had helped him up and led him to the store, where he said he was heading. At that point, we were finally able to convince my mother she could no longer leave him alone.

As I soon learned, it’s not unusual for a crisis to finally cause action when it comes to dementia. That’s when we found Amazing Place. It turned out be a wonderful haven for both my father and mother. He made some new friends, enjoyed drawing—a long dormant talent—and excelled at trivia games, as his memory, as is common with FTD, was intact. My mother had time for herself and received much-needed emotional support from the staff. Knowing he was safe was a tremendous relief to all of us.

It wasn’t long after my father died of heart and kidney issues that my mother started exhibiting signs of dementia herself. Like many families, in which siblings live out of town, it took time to get everyone to acknowledge the reality of what we were seeing. Even after she had a transient ischemic attack (TIA), there was skepticism. Some family members thought that it was chemo brain, or just a worsening
of her spaciness. But as newspapers piled up in her apartment, she was getting lost driving, and she finally confessed that the re department had been called a number of times due to her burning food, I made the appointment to see a neurologist.

Once she was diagnosed with a combination of vascular dementia and Alzheimer’s, something profound happened in our relationship. It was almost like a switch flipped; I began to see her in a completely different light. I accepted that she was no longer the mother I knew, and could never be the mother I had longed for. I recognized that her behavior was no longer in her control.

What had once been hurtful and made me angry, now I found endearing. One day, while visiting her in her assisted living home with my nineteen-year-old daughter, my mother turned to her and exclaimed unabashedly, “Tell me a story about me!” I teased her, but in a loving way, and we all laughed. I realized it was the first time she could laugh at herself. And instead of feeling indignant, I found it humorous.

On another occasion, with tears in her eyes, she painfully confided to me, “I just miss my mind.” Now, instead of the resentment I had felt towards her for so long, I felt intense compassion. I was finally able to accept her self-focus and realize that she was just another wounded child, as we all are.

As her dementia deepened, we were both able to appreciate and acknowledge each other’s strengths. I came to see her youthful vigor, creativity and lust for life with new admiration. I felt pride, like never before, for how uncommon it had been for a mother in the early sixties, to have so much ambition for a career and return to graduate school to become a guidance counselor. I learned to appreciate how hard it must have been for this native New Yorker to move to Texas after seventy years, and how seamlessly she had embraced Houston as her new home. And, I came to value her ability to hold on to her dreams, even in her dementia, including her goal of one day opening a beignet store.

She began to call me “her rock.” For the first time, instead of complaining that I wasn’t doing enough for her, she became effusive in her praise and grateful for our time together. It made it easier to be with her, and I looked for things to do with her that she would enjoy. One memorable day, I thought she’d love a makeover at a department store make-up counter. While I once would have never indulged her in her vanity, now it seemed a loving thing to do. It turned out to be entertaining as well. As she looked in the mirror and used her hands to pull back her face, she exclaimed cheekily to the saleswoman that what she really needed was a facelift. The woman laughed and said, “Well, we don’t do that here!” I whispered to her that my mother had dementia, and the next thing my mother said was, “How about some eyebrows and eyelashes? Uggh, I look so old!” By this point, a few other sales people had gathered around and my mother adored the attention. They whispered back to me, “She’s so cute!”

She started calling me and telling others I was her mother. I had become her advocate and protector, and she seemed to realize that. It felt somewhat ironic, as my whole life I had wanted her to be a better mother and felt she looked to her children to mother her. Now, she was acknowledging this dynamic, and I embraced the role I had once resented.

Each time we talked on the phone or I visited her, we would say to one another, “I love you.” What is most surprising is that we had never uttered these simple words to each other before.

Several months before she died, I was sitting with her on her bed when her nurse, Amy, came in. Out of the blue, she bluntly confessed to Amy that she hadn’t been a very good mother and even declared, “I was a bitchy mother.” Even though I had searched for an apology for years, I tried to reassure her, saying, “Well I didn’t turn out so badly!” She immediately responded, “That’s because you had so much therapy!” It made me laugh; and she seemed surprised, as she was totally serious (and accurate). But I also realized in that moment that I was no longer angry and she was making amends in her own way.

When my mother was her most vulnerable and least inhibited, we had found the relationship each of us had been searching for all those years. Her dementia, which I originally had seen as taking away the opportunity for our relationship to improve, had given us the opportunity to forgive and accept each other.

Three months after she finished her butterfy painting in my kitchen, she passed away. We placed that painting, her last, in front of her ashes at her memorial service. She would have glowed knowing it was front and center and receiving so much attention. And maybe she did know.

Today, my life work is dedicated to those living with dementia and their families. It is clearly not a coincidence. I know it is my way to remain connected to her—a mother I once thought I would never be close to. Her butterfly painting sits on my desk at Amazing Place—a fitting reminder of how our relationship miraculously transformed. All because of dementia.

The above essay is an excerpt from “Remembering What Matters: Stories From an Amazing Place Reveal the Unexpected Lessons of Dementia.”

 

 

 

 

 

 

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