sensitivity note: dementia, death, grief, dying
My dad died ten days before Christmas.
It was a surprise, which in itself was a surprise. He’s had different issues over the years including diabetes, various strokes, obesity, and advanced dementia. The last one is something I’m still coming to terms with, still acknowledging. How is it possible for someone to still be living and breathing and talking and yet not know remember the vast portion of their life anymore?
Regardless, I’ve known for many years that he’s going to die. There were a few times we thought he was going to die. When he got COVID-19 in a nursing facility, for example. With his medical issues, I thought he was going to die before my mom. She died of a rare form of cancer in 2022. From diagnosis to death, it was just over a year and a half. A year and a half! That experience is the caregiving experience I have held so close to my heart.
It’s a bit more complicated with my dad.
My parents divorced when I was a senior in university. He’d met someone else online before it was in vogue to meet someone online and moved out of my childhood home to a different state, one I’d never been to before. He and that person ended up breaking up, and yet my dad remained in that state. I assume he could have moved back or moved somewhere else but he stayed there until he died. Eventually, his memory started to fade and other medical issues started to sprout and he’d moved into a nursing facility/rehabilitation center.
We didn’t have the best relationship during my life. I feel like caregiver stories should include more of the interpersonal relationship between caregiver and the caregivee. It’s not just about performing caregiving roles and preparing dinners and making beds and getting dressed and and and. It’s also about the relationship the caregiver has with the person they are caregiving for.
It was complicated with my dad.
I volunteered to be a caregiver for my mom. I helped her first with her hip-replacement surgery and then with her cancer diagnosis. With my dad…his advanced dementia, diabetes, strokes, etc was too far out of my experience. Too far beyond my comfort zone, let alone location of living. No one asked me to be his caregiver, nor did anyone expect me to be his caregiver.
But we did have phone calls. Lots of phone calls. He’d call incessantly. Over and over and over and over. He’d ask for my phone number multiple times. He’d had phone issues right to the end. During COVID-19, I started arranging Zoom calls with him and the nursing staff, which he loved. I was happy that we had these moments where we were able to see each other, talk to each other. Sometimes the calls would be a few minutes and other times would last right up to Zoom’s 40-minute cut-off point.
After my mom died, it took a long time for the grief to subside. I then realized: I have another parent I can talk to about things! Even though he had advanced dementia, it still counted. I gravitated toward him as a parent, arranging more Zoom calls and even getting a SIM card with a UK phone provider that allowed me to call select US numbers. Even though we had a rocky relationship previously, his dementia seemed to smooth all of that over. On these calls, he gushed about my writing, mentioned he was proud of me to anyone who would listen, and was genuinely excited whenever I called.
The last Zoom call we had was one of my favorites. I didn’t know it was going to be my last Zoom call with him. Even though it wasn’t with a big publisher and wasn’t “prestigious,” I told him about this Doctor Who anthology I’d had a few pieces of flash fiction published in. I held up the book to the screen, showing my name in print in this book. He was so proud.
After my mom died, I pursued a master’s degree. Grief tore my insides apart because I wasn’t able to share any of my post-graduation updates with her. Any of my career ideas, book ideas, travel ideas. Nothing. But then I realized…my dad! He’s alive! I could talk to him about these things. So I did. I mentioned one last career idea that I had, and in his way he was proud of me and thought I’d be great at it.
I found out the following week when I was on a mini vacation with a friend and her sister that my dad fell and hit his head. (There’s a lot more to it than that, but that’s the story for now.) I called him on my UK phone the next day. His words were muffled. I told him incessantly that I loved him, that I was thinking about him.
He died three days later.
The first few days after he passed didn’t feel real. I kept busy, doing work things and getting swept away in holidays. It wasn’t until January when I truly felt lost. It’s hard to lose a parent, and it’s hard to lose a parent when you’re the caregiver. It’s hard to lose the second parent, and it’s even harder to lose the second parent who also needed caregivers (To clarify, it wasn’t expected of me to be a caregiver for my dad. Not at all.)
The truths came hard and fast:
Both of my parents are dead.
Both of my parents had major illnesses—both needed major caregiver support.
The two people who loved me most in the world are gone.
They’re never going to know anything about my life ever again.
Losing both parents when relatively young is the worst.
I am now an orphan.
Madeline Wahl is a recent graduate with an MLitt in Fantasy Literature from the University of Glasgow in Scotland. She is a writer, solo traveler, and millennial caregiver to her mom, who recently passed from terminal cancer. Her writing has appeared on Reader's Digest, HuffPost, Red Magazine, and McSweeney's, among others. She is working on her first novel in YA Fantasy and her first nonfiction book proposal on millennial caregiving.
My heartfelt condolences, Madeline. I'm sending over some hugs.
Madeline, it's so good to read your words despite what you are sharing--actually, because of what you are sharing. I've always been drawn to your vulnerability, the depth and breadth of your heart. When Josiah was killed, I questioned if I was a mother anymore because he was my only child, the only one to ever call me mom, and he was gone. People assured and reassured me that I was still a mother, but their words fell flat with me. They seemed to be missing the point. So, as much as I am tempted to tell you that you aren't an orphan, I will not because I can hear that fact is very real right now and I'm so sorry for that.
What a beautiful human you are and what an incredible daughter to show up for both of your parents in the way that you did. My motherly heart is soothed by knowing that children like you still exist.
Sending you great big hugs and deepest condolences for the loss of your dad. Liz ❤️