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We both know what's happening

A deeply personal essay on family, love and loss

Malala

Nov 23, 2021
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A good friend of mine wrote today's issue. I am publishing it anonymously at her request.

This deeply personal essay reflects on the wide range of emotions we feel about family, friends and our own lives – especially when we experience hardship. I hope it will help readers who may be struggling with how to process grief, as so many of us have in the last two years. Please share it with the people you love.

– Malala

Author name withheld

Two weeks after we got the news, I took my mom to the pharmacy to pick up a few medicines. She lingered in the cosmetics aisle, buying time instead of products, in no hurry to go home. But I couldn’t wait any longer. I turned to my mom, ready to say all the things I’d been burying for the last five years.

My phone buzzed in my back pocket. It was Saturday, but one of my colleagues wouldn’t stop calling. My job has no working hours. I’m on call whenever they need me – and lately they needed me a lot.

I wanted to scream at the person on the other end of the phone that their problems weren’t bigger than mine. I wanted to scream at them for calling me about work on Christmas Day in 2018. I wanted to scream, “My father was just diagnosed with Alzheimers. He can’t remember something I told him five minutes ago. I saw this coming and my family didn’t take it seriously. I saw this coming and I kept working and didn’t spend more time with him.”

I picked up the phone and said, “Hi, how can I help?” while my mother scanned the nail polish.

***

Alzheimer’s is a cognitive disease that mostly affects people age 65 and older. It starts with memory loss and ends in death. In the middle, you can lose your ability to carry on a conversation, feed yourself or recognize your loved ones. On average, a person with Alzheimer's lives four to eight years after diagnosis. Despite decades of well-funded research, there is no cure.

It looks like this:

  • I’m sitting at my desk concentrating on work and my dad calls me. As soon as I say hello, he says “Happy birthday!” He asks me if I have any good celebration plans and tells me he’s so happy I was born. We talk about his dog for ten minutes and hang up. It’s not my birthday.

  • On a fall weekend, my sister and I and our families travel to my parents’ house for a visit. At dinner, my dad asks my daughter three times how she met her new boyfriend. Three times she explains what a “party bus” is. I watch the rest of my family – from my 68 year-old mother to my seven year-old nephew – make the same facial expressions over and over, as if they’re hearing this story for the first time, as if we’re all rehearsing a play.

  • The following week my dad sends me a thank you card for the gift I brought him. A few days later, I get another one – same stationery, same handwriting, same thank you for the same gift.

My family is in the early, slapstick stage of Alzheimers. Lately, my dad’s favorite joke is ending calls with “I love you, Gayle” – my little sister’s name. Then he starts to giggle.

The punchline goes, I’m still in here. We both know what’s happening. Let’s have fun while we can.

***

My paternal grandparents had Alzheimers or dementia too. Since I was in high school, my father has lived under the shadow of cognitive disease.

Five years ago when he started routinely losing his car keys, I threw myself into prevention efforts. I bought cookbooks like The Healthy Mind and encouraged my parents to try the recipes. On multiple occasions, I tricked my dad into long hikes, believing that a lifetime of rejecting the great outdoors was just because he hadn’t seen the right trees. I gave him brain-boosting puzzle games. I sent articles with the latest research on links between Alzheimers and sleep, diet and exercise. I sent reports on drug trials and case studies of alternative treatments.

Over the years, I would ask my mom if she’d used the cookbooks and she would always chirp, “Not yet, but I will!” The puzzle games sat unopened in a closet at my parents’ house. No one responded to the articles I sent.

When the diagnosis finally came, I couldn’t understand why they heeded none of my warnings, adopted none of my suggestions. I was sure they could have done more. I asked myself why they didn’t love their children and grandchildren enough to prevent this.

A few weeks later, I sat in my doctor’s office for my annual check-up. He listened as I detailed my family history, my dad’s diagnosis and asked what I could do to avoid this fate for myself.

“You need to eat healthy and do moderate exercise. It’s not the vegans or the marathoners or the Cross-Fitters who live the longest. It’s the old lady who gardens and walks every day,” the doctor said.

And there it was. I knew it. Exactly what I had been telling my parents for years. I nodded my head and tapped my foot. Under my mask, I might even have been smiling.

“But,” he continued, “with your genetic history, there’s really nothing you can do to stop it. These things might help slightly, but they also might not. We have no proven way to prevent Alzheimers and no cure.”

***

Denial, anger, bargaining, depression, acceptance.

- The Five Stages of Grief

All these years, I had been in denial. I told myself if we worked hard enough, we could save my dad’s memory. It was never true.

I am in the anger phase now. It shoots out of me without reason or warning.

I am angry at my high school biology teacher for telling the class we were 10-15 years away from a cure for Alzheimers. I’m angry at my husband for not realizing when the dog chews on her dew claw it means she needs a nail trim. I’m angry at my mom for putting her life on hold to raise children and support my dad’s career. I’m angry that she saved all her best plans for retirement and now she won’t get to do any of it.

I am angry at my sister for saying she might move closer to my parents to help my mom because I assume she thinks I won’t. I’m angry when she gets her dream job and doesn’t move after all.

I am angry that the treadmill I ordered in August still hasn’t been delivered. I’m angry at work for taking all my time and at myself for giving it away. I’m angry at one of my oldest friends for texting my husband to find out if I was okay when I didn’t respond to her because I just couldn’t talk about this any more.

I am angry that my daughter might someday feel like I do now.

***

My mother calls to report on my dad’s latest cognitive test with the neuro-specialist.

“One of the exam questions was ‘How many planes were involved in 9-11?’ He said ‘two’ but then he remembered and changed his answer to ‘three.’ So that was good."

“There were four,” I reply. “Pennsylvania.”

“Oh,” she says. “You’re right.”

***

Last year, an old friend with three little children died of cancer before she turned 40. I heard stories of her family gathered around her bed, singing songs, playing games and watching her favorite TV shows. I want to be like them – but so far, I’m not.

My dad wouldn’t want this rageful, weary version of me. He would want me to remember the Saturdays when he took my sister and I to the movies. Afterward in the parking lot, while we were coming down off our candy high, he would walk us all the way to the car, claim he forgot something and turn us back toward the theater. Just as we’d reach the door, he’d pull out tickets to another movie we wanted to see. “How about a double feature?” he said, while we jumped up and down in excitement.

He would want me to remember the time he, out of nowhere, took French cooking classes and made us four course meals complete with chocolate soufflé, fancier than anything our casserole-based Midwestern palates could imagine.

He would want me to remember him waiting until my mom wasn’t looking and slipping a calculator under my bedroom door so I could finish my math homework faster, come to the yard and toss a baseball with him until the sun set.

***

I am scared of losing my father.

I am scared that one day this will happen to me.

I am scared of wasting the time we have left.

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5 Comments

  • Regina Joyce Clarke
    Thank you for this.
    My Dad got Alzheimer's starting when he was 80. I had no idea what accounted for his mood changes, the forgetfulness of the vibrant man with grand intellect and such enthusiasm for life. I moved away for three years to work in Texas where my son was, but then Dad called and asked me to return to Massachusetts, to home. I know now he had become aware of what was happening to him, as I also began to recognize his symptoms, and when I returned very soon afterwards I knew the family was in denial. They also saw my efforts to help him as a kind of betrayal.
    But for the next four years I stayed in the northeast, and took him on outings and we talked of old things and new events and the literature and art he loved, and he managed a good level of communication. But there were changes. My mother didn't want to know any of the signs. No one in the family would let me talk about it. Then one day I left Dad in the car outside a seaside place we had gone to since I was a child so I could get him some special french fries. When I came back he was in a panic. He didn't know who I was, or why he was in the car, and was trying to get out. I was aware then that everything had irrevocably changed, that my dearest Dad had entered another stage of this heartbreaking disease.
    Some memory returned for him for awhile after that. He had an indomitable spirit. At their house my mother gave him orders of what to do like a martinet and he was docile with it. Whenever I visited he would make me a cup of tea. I have photos of him then, and the energy and keen mind and love of life show in his face and smile.
    But he did succumb much more. And the family put him in the dregs of a veterans' nursing home because it was free since he had been a soldier in WWII, but it was a place like out of a movie in its despair and smells and a TV blaring 18 hours a day and so many men living there in states of physical and mental loss and deprivation, all so very alone. I had no power to stop the family and direct them to a better place because my brother had been assigned Dad's legal health advocate. I never dreamed of what happened then could have ever happened. I visited Dad almost every day in that terrible place and because I was making good money in a good job I told the family I could arrange for Dad to stay at home and get in-home care, or I could even buy a place to live that was larger for the purpose. I received a sad, terrible, and vicious letter from my youngest sister expressing her and my mother's feelings about how worthless I was and my help was not wanted. I have kept a copy of it, not to read again, because I haven't, but to remind me that the death of a parent can transform people and that I had never imagined how much hatred had been present toward me because of what I wanted to do. But it was not toward me. I knew that the instant I received the letter. I knew it was rage at losing Dad and no one in the family could tolerate that depth of feeling. So they lashed out at me. That did not prevent estrangement, but I have no judgment of them. I do not understand such a reaction, but I also know how deep the pain had to be, is still, for them. Dad had held the core energy of the family all our lives. It was a place that could never be filled again with his presence.
    I keep a framed photo of Dad in his 70s shoveling snow in winter--he is standing up in his long coat holding the shovel, the road and trees behind him, and smiling with that irrepressible delight in life.
    The last time I saw my Dad was two hours before he died. I was alone with him and talked to him for a long time. His eyes were closed and his face so pale and the skin drawn tight against the bones. Yet I did not feel sorrow. I felt immense gratitude that I had come back to the region where I grew up to have time with him and I felt this intense sense of Presence. It felt as if I were on holy ground. I know it was Dad's gift to me.
    • 25w
    • Edited
  • Myssie Cardenas-Barajas
    Wow. This hit my heart like a ton of bricks as I connected all too well with her challenges. Powerful indeed!
    • 28w
  • Andrew Revkin
    Writes Sustain What
    What a potent and achingly sad lament. Thinking about some promising work on a mRNA vaccine against Alzheimer's that shows promise in nice. A long path ahead still.
    • 30w
    • Author
      Malala
      Thank you, as always Andrew, for the thoughtful feedback. Could you point us to any articles you'd endorse on the mRNA research? The writer and other readers might like to read them.
      • 30w
  • Naila Choudry
    A powerful read indeed! On sone level most of us realise everything comes to an end. We just try not to think about It. But when someone gets sick or suffers an ailment, fear and anxiety is what we contend with. Loving and cherishing our time with our…
    See more
    • 30w
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