By Jon Henes
November 17, 2020
Today is my mother’s yahrzeit. It seems impossible to me that it has been an entire year since my mom lost her final battle with Alzheimer’s Disease. Since her death, I have missed her every day. But I missed my mom before her death too, even while her body still breathed. The empathetic and searching matriarch of my childhood home was a connector. She was a connector of people and she connected with people. My mom could find a commonality with everyone she met. And she would search until she found one. There is no one who met my mom who didn’t leave the interaction with a smile and feeling good about themselves and the world. The tragedy of her last 10 years on the earth was her loss of the ability to connect. My mom’s connection would have been strongest with her grandchildren — unique individuals who, but for the two oldest, she never was able to know.
As I was looking through memories of my mom over the last few days, I found a letter I wrote to her — really, I letter I wrote for me to cope — shortly before she passed away. I want to share it now in the hope that it can help others living, grieving and surviving with a parent slowly disappearing in front of their eyes. I rarely let anyone know the constant pain I felt— sometimes intense leaving me gasping for air but most of the time dull and lingering — throughout my mom’s battle. I wish I had opened up to my wife and my father and my sister and my friends rather than keeping my feelings deep inside, stoically focusing on work and the kids until the pain and loss almost broke me. I hope this letter helps people know there is no stigma to Alzheimer’s Disease and there is no shame in reaching out to others for help. I hope this letter lets people know they are not alone.
Dear mom,
Four-and-a-half years ago I wrote you a letter. I took the letter and drove up to your and dad’s house — my childhood home — in Croton-on-Hudson, New York to read it to you. It was a beautiful autumn day and we sat together under a blue sky, with a smattering of white, puffy clouds floating above, the leaves just beginning to turn from green to brown, orange and red. As I read the letter to you, I was overcome with emotion. You didn’t recognize me, I knew that. But you looked at me and you listened to me and, at one point, we connected — we saw each other again. My mom, for a moment, was looking at me, caring for me and empathizing with me.
I am now writing this letter to you. Once again, I am going to drive up to Croton to see you. This time, however, it is going to be different. The last time I visited you — a couple of months ago — it became evident that you don’t have much time left with us. You are shrinking. You are losing weight at a rapid speed. Your body is collapsing into itself as you unconsciously and uncontrollably spasm and grind your teeth. It is heartbreaking to watch. It actually hurts to watch. I feel actual pain. It is completely unfair and should not be happening. But it is. It is happening. It is real.
The last time we were together, Dad, Rachel and I sat with you. We talked to you a bit but most of the time we talked about you as you laid flat confined to your cot with barriers so you won’t roll off and fall to the floor. Dad, Rachel and I talked about whether you wanted to be alive. We talked about how we would memorialize you after you passed on to a better place. We talked about your eventual and perhaps imminent death. As I was saying goodbye to you, Dad and Rachel walked out. You and I were alone together. I kissed you on the forehead and touched your shoulder. I started to walk out of the room. When I got to the door, I stopped, turned and looked at you. “Mom, what do you want?” I asked. I knew an answer wasn’t coming but I wanted to ask, I wanted to know. “I love you, mom,” I said. You turned your head. Our eyes met. And for an instant, it looked as if you smiled. I may have imagined it. It may have been inadvertent — another spasm. But, to me it was a smile and I will always carry that final smile and twinkle in your eyes with me.
As I write this letter to you and think about coming to visit tomorrow, I am apprehensive. I am sad. There’s a part of me — a large part of me — that doesn’t want to see you. I don’t want my final memories of you to be like this. I want my memories to be of the vibrant, beautiful, wonderful woman who reared me and cared for me. I want my memories to be of you playing with your grandchildren and making everyone you met feel special as you connected with them. I want my memories to be of you studying to get your MBA and coming to my college graduation and dancing at my wedding and relaxing on the beach in Nantucket.
I know this would make you upset, but I am also angry. It is so unfair that you missed out on so much that you would have loved. As much as you loved being a mom, you would have loved being a grandmother so much more. And your grandchildren are so incredible.
You would have loved talking with Sam and hearing his thoughts and views. He has so many of them. His thoughts are so mature for a person his age but also evolving as he increases his experiences. He would have reminded you of Grandpa Leonard and of me when I was his age — constantly talking and questioning and speaking with authority and talking. (Yes, mom, I wrote talking twice since he does talk!) And he would have called you — he would have picked up the phone out of the blue just to say hi — just to hear you voice and let you hear his. That’s the kind of kid he is. He loves family. He has the biggest heart. When that phone rang and you saw it was him you would have smiled and been so happy to talk to your grandson.
You would have loved to spend time with Ellie and her mature and biting sense of humor. You would have loved her cacophonous laugh. You would have marveled at her ability to read people and situations and you would have admired and been so proud of her strength and intelligence. As you were ahead of your time fighting for gender equality and a level playing field in the workplace, you would have smiled with pride at Ellie’s fearlessness and confidence and you would have felt badly for anyone — man or woman — who would try to get in Ellie’s way as she strives for her goals and place in this world. And you would have loved to listen to Ellie play the piano and the way she makes it sing.
You would have loved to spend time with Charlotte and get to know her sweetness. Charlotte has a sweetness and empathy that cannot be taught. You would love to watch Charlotte do gymnastics. Her meets are awesome. You would have loved Charlotte’s tenacity and grit. You would smile watching her ride her horse, sitting so straight and graceful — she makes everything seem so much more beautiful. And she cares so much — about everything and everyone. And you would love seeing her as she’s growing up. She’s now at the age where she is maturing from a little girl to a teenager and, despite growing up, she still loves having me, her dad, walk her to her bedroom (which she shares with Ellie) to put her to bed and kiss her goodnight. And I love that more than she will ever know.
You would love spending time with Cece and learning what a beautiful diva she is. Cece has an inner strength and confidence that would amaze you. She’s a leader with her own sense of style. She is so strong, physically and emotionally. She is making her own gymnastics’ path and works so hard to perfect her routines. You would sit in our playroom and watch her do the most amazing walkovers and bridges and handstands. And you would have laughed with joy and admiration as she took you into her room to get dressed, picking out her clothes and putting together amazing ensembles. Every morning when I wake Cece up, I lift her out of the top bunk and we hug. We hug for at least a minute. It is the best way to start a day. And on the rare days I am out of town, when I get back home she always reminds me that the next morning we need our hug. I would have shared these hugs with you mom. And you would have loved those hugs.
And then there’s Jake. The final piece of our family’s puzzle. Jake is adorable and smart and simply an inextricable part of our family. He is independent, empathetic, curious, active, funny and loving. You would have loved to have taken him all around New York City to explore. He loves to explore. You would have taken him to the Freedom Tower and the Empire State Building and Wollman Rink and Central Park. He is obsessed with hockey. He watches almost every Rangers game and Madison Square Garden is becoming a second home. He plays knee hockey in the apartment all day and he is learning how to skate. He snuggles and tackles and stands up for himself with his four siblings — who love him with every ounce of their hearts. You would have loved to go grandparents’ day at his pre-school and read to him and draw with him. You would love his hair!
Thinking of all you missed and will miss breaks my heart. And what makes it worse is that you’re still here. It is entirely unfair that you are still with us physically but cannot be with us emotionally and mentally. I am so sorry this happened to you. I miss you. I have struggled mightily to handle my loss. Although I am anxious about my visit with you, I wouldn’t miss it. I fear that this may be the last time I see you. Tomorrow may be my time to say goodbye to you. If I do have to say goodbye I want you to know you will never be forgotten. You will live on in your family and your goodness and strength will be carried on by your grandchildren. When you pass on I will be sad. I will cry. I will spend time thinking about all you did for me and how much you meant to me. But I have already cried so many times. I just want you to be ok. I want you to be in a place where you don’t have to suffer — a place where you can be in peace.
I love you,
Jon
