finding new beginnings at the end
Kay was the first person I had ever met to be diagnosed with early-onset Alzheimer's (meaning diagnosis happened before the age of 65). All too early, she joins a rapidly growing group of 44 million people across the globe living with Alzheimer's or another form of dementia.
Here was Kay, in the early stages earlier than most. "Degenerative" and "incurable" now labels pinned to her chest. I had no idea what to expect from my conversation with her. I had prepared myself for the worst. I readied myself for tragedy and overwhelming sadness to come as we discussed the experience of knowing what is going to happen and to being helpless to stop it. My mind, always searching for an analogy, imagined Fortunato from Poe's Cask of Amontillado. Poor Fortunato, chained to a wall in a holding cell as his rival slowly builds a wall around him, brick by brick. He can do nothing but sit and wait, knowing he will he never escape the dark and isolation.
Perhaps some people would draw a comparison between their experience with Alzheimer's and morbid literary references, which would be perfectly valid. Kay, however, does not. Ironically, Kay did mention a holding cell in our conversation but it was in this context, "I feel like I’m in a holding cell and God is letting me write and create. You have a choice when you get diagnosed with Alzheimer’s. You can be angry, you can be frightened, or you can try your hardest to live fully."
Needless to say, I was not expecting to encounter a woman brimming with memories and a sense of humor. If only optimism were contagious. She'd be in high demand.
Kay peeks out from her apartment door and greets me in the hallway with a big hug.
“We just didn’t know what to expect, now did we?"
I walk around her living room while she makes me a cup of coffee in her Keurig. Donut Shop. Nice.
I study all the knick knacks on her shelves. You know, the trinkets only grandmothers seem to have. I wonder to myself if one day I will embody what I know to be grandmotherly. Will I have decorative bathroom towels and bowls of two-year old Werther's, wear crew neck sweatshirts with cats on them, and be worshipped for my cinnamon roll recipe? Or will I shop at GAP, live in a loft, and feed my grandkids quinoa salad? Futuristic grandmas. This is kind of blowing my mind to think about. I make a mental note to remember this and turn to Kay, who appears to be searching for a note of her own. Rummaging through a sea of papers cascading over her countertop and onto the kitchen table, Kay pulls out one where she had written: do this today or tomato
“How funny is that? I have no idea what I was thinking or talking about. Alzheimer’s feels like information evaporation. I keep asking questions about things I already know. I’m disorganised and I’m leaving myself all these notes. But I want to write a book about how to make peace with Alzheimer’s and call it Today or Tomato. So this little note inspired me."
Kay tells me about how Alzheimer’s causes her to mix words up frequently.
"I spent a whole day not being able to say 'deeper digging’. I kept saying, 'I’m going to do some digger deeping’. Seriously, all day I kept trying to get it in my head and it never came out right."
“But I’ve always been called ‘Crazy Kay’. I was always the one forgetting things or accidentally wearing two different shoes. I’ve been like this for so long that my friends told me, 'Honestly Kay, how would we have known? How did they diagnose you because this is just you.' I understand their confusion. If you look at the symptoms of Alzheimer’s…it’s like I’ve been displaying those for forever."
“So what caused you to notice a difference, then? How did you get diagnosed so early?” I ask.
“Well, now that would require a memory,” she says and lets out a little chuckle.
“It’s okay if you can’t remember.” And it is okay. Especially because Kay launches into stories about her mother, Hazel, that she remembers with beautifully vivid detail. Hazel was also diagnosed with Alzheimer’s disease.
“I don’t think she was diagnosed with early onset for the very reason that nothing she was doing was unusual for her. She’d always been a space cadet. Always silly. We had a hard time knowing something was wrong because she was a fruit loop. She always had her wig on the wrong way and we’d get behind her and fix it. I mean, really. I could write a book on Hazel."
Hazel had two sons from her first marriage when she met Kay’s dad, Ed. Kay was the only child they had together.
“They had a wonderful marriage and it was fun to watch them together. I think for him to have a child and have it be a girl…he thought I was the best thing. I remember being in my footie pajamas and he’d put my feet on top of his shoes and dance with me like that. It was so fun."
Kay’s dad died of a brain tumor when she was a teenager.
"I remember in junior high getting called to the principal’s office and I just stared out the window at this big blue sky because I knew he was going to tell me that my dad passed away and I couldn’t bear to look at him. But I am embarrassed and sad to say I didn’t go through the deep sadness at that point. It was much later. I was so in my own little world. It was all about boys and parties. One of my favorite people at the time was a black basketball player, Jean Baker. I thought he was hubba hubba. I remember when my dad died and he found out, he accompanied me to my locker and helped me get my books and go home. When I came back to school he would walk around with me a lot and said, ‘I know people are trying to be nice, but if you just want to be yourself or be alone, let me know.’ He showed me so much kindness. Goodness. He was a hunk a hunk of burning love. Back then there weren’t many mixed relationships and I look back and think, 'Who cares? What was your problem?!’"
“So whatever happened to Jean Baker?” I ask.
She grabs my hand and looks at me with mischievous grin.
“Do you want to see him?”
We make our way through the craft studio and into a walk-in closet where Kay pulls out a yearbook. She searches for this hunk of burning love. Before she finds him, Kay points at a photograph of a young woman dancing and says, “This girl…she got busy in a lot of back seats, if you know what I mean."
I love this woman.
And finally, there, right in the middle of the page is Jean Baker.
She’s right. He is a handsome devil.
I ask Kay to tell me more about her love life. She met a man named Steven when she was working as a receptionist at the local news station in Davenport, Iowa. He was enrolled at Palmer Chiropractic school and was…wait for it…Australian.
I blurt out, "WHAT?! You got to marry an Australian? Sorry, I just have a weakness for accents."
"Oh hunny, me too."
Kay and Stephen had 4 children: Jason, Jennifer, Carrie, and Josh. Steven worked at a chiropractic office in LeMars, Iowa and they bought a ranch house on an acreage. Kay recounted fond memories of the kids’ chaotic bathtub times, riding around on four wheelers, and building a deck.
“There were some really good times. I would say that I loved him, but I was never in love with him. I loved the kindness of him. Very, very nice man and I love him for being the father of my children. But after 20 years we split up and he remarried."
“Was that completely soul crushing for you?"
“I don’t even remember how I found out. I had to find a job and that was hard. I had to go through a bankruptcy. We struggled for a while, but Steven helped out once he could. I think I have to blame myself because I was so wrapped up in the kids and he wanted to go do things. He wanted to go places. ‘Let’s do this’ and ‘Let’s do that’. I was president of the PTA. I ran for school board. I just didn’t have time for him. I look back and everyone felt so sorry for me and I thought, ‘Uh, no. This is me. I did this to myself.’ I think initially I was a good mom and a good wife but somewhere along the way he was priority number 5 instead of 1, and that’s not the way it’s supposed to be. Interestingly enough our kids and his new wife's kids were friends. And happily. There wasn’t any side taking. I mean, after awhile it was so obvious that they were perfect for each other. I was so grateful for how kind she was to my kids. And now we email. We see our grandkids together sometimes. We all made our peace."
Kay finds a photo of her with all the kids and grandkids. She gushes over each one, but stops several times to talk to her cat, Pipi, who has curled up on her desk. She tells me this is her sanctuary where she makes cards, watercolor paintings, and cuts out collage material.
"I could be in here all day long. Sometimes I am!"
“This one says, ’The beet goes on’…get it?"
I start to ask her some questions about Alzheimer’s disease but as we’re talking, she keeps interrupting herself and getting distracted by the birds outside her window. She’s aware of this and apologizes, but right now I find it nothing but endearing. She begins to talk about her mother again, describing a visit to see her towards the end of her life:
I’m sitting here in awe of Kay's positivity and outlook, which over the course of our coffee and conversation, she has attributed entirely to her faith and sense of humour. It has to be scary sometimes though, right?
As a cat lover who is friends with many other cat lovers, my heart is exploding in my chest as I watch Kay and Pipi, imagining that little paw pointing out crossword puzzle words. Thank God for animals. Pet therapy is legit.
"I think when you’re going through some kind of dementia, you need to have a sense of purpose. The things that I’ve put off, I can’t keep putting off. I’m learning to quilt. I have a list of things I want to accomplish and that’s one of them. I want to keep watercoloring. The people who say to me, 'It’s too late'…I want to convince them it’s never too late. My daughter once sent me this thing that said, 'You know all those things you’ve been wanting to do? You should go do them.' Isn’t that great? You have to have a sense of joy."
So, what does Kay want people to know about Alzheimer's?
“It doesn’t have to be the beginning of the end of your life. It’s the beginning of a new experience that you are a part of. We tend to look at the end of things in our later years, but there are still new beginnings. We just have to focus on that, I think."
If this story tugged on your heartstrings and you want to send Kay good vibes...