In this excerpt of Radical Curiosity: One Man’s Search for Cosmic Magic and a Purposeful Life, author Ken Dychtwald offers a personal perspective into what it’s like to lose a parent to Alzheimer’s disease.
Read an excerpt from Radical Curiosity below.
My mom, Pearl Dychtwald, died on October 1, 2016, at the age of ninety-three. Overall everyone was very kind to me upon learning of her death: their reaction was generally, “How sad.” Maybe I’m deluding myself, but although I miss her deeply, her death didn’t feel sad to me at all.
My mom was always, always, always a caring, kind, and loving human. When I was a child, she was the mom that my friends would come talk to when they were having trouble at home. When I was a teenager, she taught me to dance the cha-cha and to do gymnastics. Then, in my hippie years, as my dad and I regularly battled it out to determine who was “right,” my mom never lost her gentleness and perspective. She’d say, “You’ll be fine. You and your dad love each other so much. Everything’s going to work out, I believe in you.” She was always this way—her belief in me never faltered. Her positivity about everyone never faltered.
When she reached around eighty years of age, my mom’s memory started to fail, and over the next dozen years she was slowly decimated by Alzheimer’s disease. Every time I’d see her, which would be every several months, she’d be less there. Although raised in poverty and never educated beyond her high school diploma, she was always a very wise and elegant woman. When she was growing up, she was trained as a dancer, in everything from ballet to tap. She was poised and graceful both in her movements and in her nature. Even into her seventies she practiced her dance steps and choreographed routines daily, and she had even begun teaching tap classes to the retired women in her community as well as to the low-income kids who lived in nearby neighborhoods.
But Alzheimer’s chiseled away at her mind and her memories. After a long flight from California, when I’d come in the front door of their home in Delray Beach, Florida, she’d always rush toward me and greet me with a big hug. But I couldn’t help noticing that her makeup would be askew, or she would have two different socks on, or she’d have forgotten to zip her slacks. At the same time, each year my dad was becoming increasingly distraught because the love of his life, was clearly losing her mind. In her final years my dear mom also struggled with chronic obstructive pulmonary disease, and for three hourlong sessions a day she had to wear a nose mask and breathe through a nebulizer connected to a big oxygen tank to help her lungs stay clear.
After one terrible fall, we learned that she had fractured her pelvis and would need to spend six weeks in a rehab facility. This terrified her, as she didn’t know where she was, couldn’t figure out who the people orbiting her were, and was so sad to be away from my dad, who sat beside her all day, every day, and held her.
One night my mom awakened, unsure of where she was, and needed to go to the bathroom. She cried alone until she figured out how to push the button beside her and call for help. After a while, an aide showed up and lifted her to the toilet seat in the bathroom. Then he forgot about her and just left her there. In the morning, when we arrived, we found my beautiful mom still sitting on the toilet seat, confused and crying uncontrollably. She didn’t deserve to be treated this way. Nobody’s mother deserves to be treated this way. Nobody’s mother deserves to be in this situation in the first place.
Nevertheless, due to her kind and positive nature, with each blow to her mind and body, my mom kept bouncing back. No matter where I was or what I was doing, I always made sure to talk to her every single day for decades. I loved her so much, and the sound of her voice, however unsure of itself, warmed my heart.
When my dad died in October 2013, my mom at first became totally disoriented. It was understandable, as they had been married for seventy-one years and were like old trees whose roots and limbs had grown entwined around each other. She’d walk around the house looking for him in his usual spots—in front of the TV watching Fox News or next to his radio, listening to the stock reports. She’d call out, “Seymour? Where are you, Seymour?” Alan and I wondered, What’s going to happen now? Our family had discussed this potential situation in advance, and we had a game plan. Alan was fully committed to becoming our mom’s caregiver. We thought she’d live a few more months. In fact, her doctor had told us that her vital signs were beginning to fail and that we should swiftly put her affairs in order. My kindhearted brother gave up his apartment and lifestyle in New Jersey and moved into the guest bedroom in my mom’s home, stepping into a role that we all thought would be intense but temporary. As a single man in his sixties, he had never really cared for anyone before, and he poured himself into it. As he attended to all her needs, we assured our mom that she would never be frightened and would never be alone and that she would never be put into a nursing home – no matter what it took or what it cost. Between us, we would do everything humanly possible to protect our mom.
In the final years of her life, because she had to be watched every second of every minute of every hour, we needed to have aides helping out twenty-four hours a day, two to three shifts a day. They’d clean the house, bathe my mom, prepare her meals, and make sure she didn’t wander or fall. These women, especially Lorna Dalrio—a warm and loving Jamaican American woman who had begun helping my dad and mom years before—became part of our extended family.
My mom kept moving forward in a wobbly but positive fashion. Whenever I asked how she was doing, she’d say, “I’m doing just fine.” When I’d follow up and ask, “Really? How come?” she’d respond, “I’m just so lucky, I’m so fortunate to have Alan and you and Maddy and Casey and Zak. I may be the luckiest woman in the world!” Even when she became incontinent and had to wear a diaper, she didn’t complain. The aides all thought she was like an angel. They would say, “Mrs. D., it’s time for your medicine,” and she’d say, “Thank you so very much. You’re so kind to me.” And when they put her socks on, she’d thank them profusely. As a psychologist/gerontologist, I know that many people with Alzheimer’s become agitated or ornery. My mom didn’t. While she was somewhat adrift mentally, her essence of kindness shone through.
Over the last year of her life her mind and body were shutting down and she began losing the ability to walk. Then, in the last few months, she could barely use her arms anymore. Whereas she’d always wanted to go to the beauty salon once each week, now her hair was stringy, and her lipstick, which she insisted on putting on herself, was tilted. Her clothing, which she had always taken great pains to have look nice and neat, was sloppy. During that period, for the first time, she began to ask my brother, “Why am I still alive? I had a wonderful marriage and a marvelous life. But I don’t know if I should be alive anymore.” This upset Alan, but over the months that she was broaching this issue, he began to realize that in her own way she was signaling that the end was getting nearer.
By then her short-term memory was nearly nonexistent. For example, one time when I came to visit, we sat and held hands while she watched the TV show Jeopardy. She kindly asked me if I’d like some watermelon. I told her, “No thanks.” Several minutes later she again asked me if I’d like some watermelon. I told her again, “No thanks, Mom.” Then only a few moments later she asked me if I’d like some watermelon, and again I told her no This continued over and over again through the night, until she went to bed.
One of my biggest challenges during those years was to not lose patience with my dear mom. I had to continually remind myself that she wasn’t being rude or inattentive, she simply could not remember anything from moments before. The Alzheimer’s was taking away everything except her essence—her kindness and appreciation of life. There were times when I thought that this must be what enlightenment is like: to be kind, caring, loving, and totally in the now.
As her ninety-third birthday approached, we didn’t know if she’d make it, but she was sort of keeping an eye on the date. “Isn’t my birthday coming soon?” she began to ask.
“Yes,” we told her, “and we’re going to throw a wonderful party for you.”
“I hope I can be there!” she said with a smile.
I kiddingly told her, “I hope so, too! Without you, it wouldn’t be as good a party!”
And so, on the eve of her birthday, my wife Maddy, and our children Casey and Zak, and I joined Alan and his girlfriend—and of course her wonderful aid, Lorna Dalrio—for a festive birthday dinner. She was as happy as could be and insisted on leaving her bed and wheelchair in order to sit upright at the head of the table. She fed herself, which she hadn’t done for months. We sang “Happy Birthday” to her, with her joining in to sing to herself. It seemed to take all her strength and focus to blow out a solo birthday candle and make a wish. Then she gathered herself and told us all how much she loved us and how thankful she was to have all of us in her life. It was a wonderful night. The next day, Maddy, Casey, and Zak left, but I decided to stay to give my brother some extra backup.
In the week immediately following her birthday dinner, my mom she took a nosedive. She just couldn’t do anything; she couldn’t even drink water. The hospice aides were called in. One night Alan had plans to go out for a few hours with some of his friends, but he wasn’t sure if he should leave the house. I told him to go out and get his mind off of things. I’d be there with our mom. That night she was lying in a little hospital bed that had been placed into her bedroom by the hospice aides. It had side railings because she didn’t know where she was and she might try to get up on her own or fall out of her bed.
I asked the aide and hospice nurse if they could leave me alone with my mom for a while. She seemed zonked, but I wanted to just hold her hand and kiss her cheeks. She looked beautiful—radiant really. I said to her, “Mom, I’d like to try to talk to you a little bit, and I’m not sure how much you can hear me.” She turned to me and gave me the sense that she was trying to pay attention to what I was saying. I asked, “Mom, how are you doing?”
She said, “Kenny, I’m doing the best I can.”
I looked her in the eyes and said, “I think we’re coming to the end of this life here.”
She nodded. “I only have a little bit left. It’s been a wonderful life.”
I told her that I wanted her to know how much I loved her.
“Oh,” she responded as she gripped my hand, “I know how much you love me, and I have always loved you with all my heart.”
“Mom, are you frightened at all?” I asked.
“What would I be frightened of?” she responded.
“What can I do for you?” I asked. She was foggy, but she was sort of tracking me.
She said, “You’ve done so much for me, what can I do for you?”
I’m thinking, Here’s my mother, she’s on her deathbed, she can’t move her arms or her legs, she’s wearing a diaper underneath her pink sweat suit, and she’s asking me what she can do for me. I held her close and said, “Mom, you’ve done everything for me. I’m going to be fine. Alan’s going to be fine. Maddy, Casey, Zak, and I are all going to be fine. We’re going to think of you every day forever. It’ll be all right, and you can let go anytime you want.”
And then, not being sure if she could hold her mental focus for any more questions, I said to her, “Mom, I’d really like to know … when you think back over your life, what part of your life was your favorite part?”
She closed her eyes, and I thought she had totally spaced out because nearly thirty minutes went by. Then she opened her eyes, looked at me, and said, “Every part of my life was my favorite part.” Then her eyes closed, and she never talked again.
The next day, with both of us holding her, she passed away. She hadn’t been frightened. The two boys she had given birth to were holding her as she left her body.
And when she died, rather than becoming unglued, Alan and I felt at peace. In many ways we had been mourning our loss for years. In her final months she wasn’t frightened; we had tried our best to surround her with love, respect, and kindness.
I miss her every day…although in truth I try to remember Pearl Dychtwald before the Alzheimer’s decimated her.
Excerpted from Radical Curiosity: One Man’s Search for Cosmic Magic and a Purposeful Life by Ken Dychtwald, Ph.D, with the permission of Unnamed Press. Copyright © 2021 by Ken Dychtwald
