Larry Bayles is 50 years old and has advanced Alzheimer’s disease. We met at a local senior center together with his wife Allison and their children, Brendan (12) and Zooey (7). Larry moved slowly and deliberately under the watchful eye of his family, carefully taking a seat. He had difficulty communicating but seemed to understand our conversation and waited patiently.
Allison told me Larry’s father had younger-onset Alzheimer’s as well and passed away at age 64, just a few months after she and Larry were married. “Larry had done neurocognitive testing. He was always very diligent, because he had that journey with his father. Even though it was in the 2000s, the way people treated folks with Alzheimer’s was really different then. We had no idea. We were in our 20s and were like, ‘Alzheimer’s? Huh? What do we do? We don’t know.’
Larry was diagnosed with Mild Cognitive Impairment right before Zooey was born. He started to display symptoms of anxiety and depression, and there was a lot that was really difficult for me. I can talk about it now, that he hid a whole lot from me about his forgetfulness. I sometimes chalked it up to him being an artist, because he was always like that. When he got the diagnosis about cognitive impairment, it wasn’t a big deal. I think part of it was denial. We didn’t put two and two together that MCI is a precursor to Alzheimer’s disease. No one said as much, even knowing our history.
There was a couple of instances where he forgot his ATM code or would just keep forgetting little things. He left his checkbook or would lose his keys. He forgot to pick Brendan up one day. I didn’t think too much about it, because I knew sometimes he was really involved in his work as a teacher. He also directed shows when he was at school, just really diligent about work. Every time I would press him on something that he forgot about, I noticed a complete change in personality.
There was a lot of aggressive behavior. Brendan can attest to this. There was a lot of yelling and screaming, and in hindsight I think it was Larry trying to mask his illness and not let me in on it. It was really, really tough having a small kid, having one on the way. I look back and I was like, ‘Oh, I wish I had known that to help him’, and I think he was so afraid, and the images that he has of his Dad’s journey with Alzheimer’s… I hate calling it a journey, because it’s not really a journey. It is and it’s not. It’s an experience. It’s a lived experience. It was really tough.”
When Zooey was three, Larry lost his job teaching theater at the middle school. Allison told me, “It was a horrific experience, and we went through a really, really difficult time. Initially, after that process, Larry went into a really deep depression, and our whole family went into therapy.
We met with someone in memory care and they started the process of testing. They did a PET scan and found atrophy that was comparable to that of Alzheimer’s disease, and then they did a spinal tap. Instead of getting a phone call, with modern-day technology, they’re like, ‘Oh, you have a message on your portal.’ So you log-in, and you’re reading your test results essentially, and I read it, and I was like, ‘Oh, lovely, what a way to find out.’ No one called. We had an appointment scheduled, but at the same time, they should have held those results instead of putting them online.
We had this diagnosis, and it’s like, ‘Wow, oh, my gosh, our world is changing.’ Larry continued to go through bouts of depression, anger, like rage that I had never seen before. Now that we’re past those stages, I understand that it wasn’t him. It was part of the illness. The children experienced a lot of that rage, thankfully, directed at me and not them. But they knew that they had to go upstairs when it happened. They would cry, maybe hide, and they still know to this day if anything happens that they call 911, and what’s the main thing you’re supposed to say? You have to tell the responders what?” Brendan sighed and responded, “That my Dad has Alzheimer’s.”
Allison continued, “So it’s having those conversations that are really difficult, but it’s for the safety of all of us, the safety of Larry. “
I asked Allison what she would like to tell families who are where she was four years ago and she replied, “Ask for help. That was the thing, and just by nature I was the person, being the daughter of a single mom, I have this mentality that I can do it all, and it’s not the case. You have to lean on people. That’s something that’s really difficult for me, but reaching out and knowing where to go. I wish that I had known earlier about resources for our family.”
I asked Allison how she would translate her family’s hardship and give hope or even humor to someone else. She told me, “Larry had said something, and it was one of his language kind of things that he had. When you think about it, it was actually kind of extraordinary. We were talking about dates and times with Larry and he said, ‘Oh, it was the day after yesterday!’
‘The day after yesterday?’ And I was like – ‘That’s today!’ I think about that, and we laugh about it. ‘The day after yesterday, what are you talking about?’ But there’s today, and every day is a new day, and I say to my kids, ‘Tomorrow is never promised for any of us, so be your best self,’ and they know that I say that every day when I drop them off at school as they’re running out of the car. ‘Remember, be kind.’ I just think if we’re kind to each other … that you never know what someone else is experiencing.’”
Zooey and I chatted about her love of theater and how she wants to follow in her father’s footsteps. With prompting from her mother, Zooey nervously talked about trips to a nursing home to read to a 95 year-old friend. She stated to cry when Allison revealed that Zooey is now reading to her Dad too. I asked Zooey what has changed at home and she replied through her tears, “The family … it’s kind of falling apart.”
Brendan was incredibly composed and attentive throughout this conversation – he seemed to assume a great responsibility for his family. After Zooey’s reply he added, “It’s like the roles have been reversed, because he showed me a bunch of things like how to turn on the TV, how to play video games, but now I’m kind of showing him how to do that, and we’ve been watching a lot of TV lately together. We’ve just been kind of helping each other out. It’s nice, because I like to feel accepted and needed as any other human being would, but it’s just nice to feel wanted and needed in the world.”
Allison scanned the teary eyes of their children and told me, “We have good days, and we have bad days. We take one day at a time. I think all of us have learned to really live in the moment. You have to do that. You have to savor those moments. I savor the moments of clarity, whether it’s every once in a while before bed, Larry will say, ‘I love you,’ and it’s Larry. There he is. Or he’ll say, ‘Thank you for taking such good care of me,’ and he’ll say it at a time where I just … where did that come from? Those are those moments that I cherish, or I see the way that he’ll look at Zooey when she’s playing or dancing around, or he’ll enjoy a moment where we’re all dancing around.
We have something at home —we have a Joy Jar. It’s to encourage those small things. We made it a point, the three of us. Brendan and Zooey and I went out and we picked out this jar, and it says “share” on the outside. We have special papers, and you just write down, whether it’s you got an A on a math test, or so-and-so made you smile. It doesn’t have to be big things, it’s the little things that make you smile or make you happy, and you put them in the jar. Then we can go in and pull them out and see.
If you have a down moment, you want to go look and feel like, ‘oh, hey!’ Sometimes that’s what we do at our dinners. We’ll open up the jar. Zooey made a thing, Family Notes, where you’re supposed to write one kind thing about someone, because sometimes being siblings, they have a hard time with that. But there’s a lot of things and reminders around our house that family is the key, and it’s really important. Larry will put stuff down in there too in the Joy Jar, that he enjoyed reading with Zoe or we were all home together for a break playing games.“
This was a particularly intense and emotional moment in our conversation and I looked over at Larry and asked, “Is there anything you want to add or share, Larry?” Head down, Larry slowly replied, “I guess I’ve been harboring a lot of guilt for having the disease, like a curse. I didn’t know how to come to terms with it.“ I asked, “How are you coming to terms with it?” Larry looked me intently and strained to speak – the words seemed ready to burst from his mouth but just wouldn’t come. He hunched, defeated and frustrated, and said, “Just trying to have kind …. I don’t know!” Sensing his frustration, I said, “That’s okay. Take your time. Do you think about your Dad?”
Larry replied, “Yeah.”
“What comes up for you?”
“I couldn’t help him, and I know it’s not rational. I couldn’t do anything to help him.”
I asked, “What do you want to tell your family to relieve them of that guilt that you feel? I know I’m putting you on the spot, but I’m sure you want to tell Allison probably what you wish your Dad told you, right?”
Larry said “I’m sorry to put you through this.”
Allison looked at him, “I’ve always said you don’t have to apologize, because it’s not your fault.”