Our family has pivoted to life with Alzheimer’s

September 17, 2025

Mike Tyson once said, “Everyone has a plan ’till they get punched in the mouth.” And we’ve been hit in the mouth…too many times.

Kevin was a NICU kid and earned way too many frequent flyer miles in the PICU. And it was hell for Captain Mommy (my wife) and me for a few years. But with amazing support from our family and friends, along with brilliant doctors and therapists, we came through on the other side in a good place. Scarred but not broken…

Life was good

Quite frankly, Kevin had a golden childhood. Not fancy but filled with cool stuff. A favorite is that he played for a baseball team through the Junior Giants (a fantastic, free program.) My wife was the organized one who communicated with the Giants throughout the season for who knows what reasons. Her communication led directly to Kevin’s team being able to go on the field to meet a Giant. He got to go on the mound with Matt Cain. He gave him a double thumbs up and the announcers laughed about it for three innings. Super fun.

Tide turned

Sure, Captain Mommy got a concussion in the chicken coop volunteering at his school. But she recovered. 6 or so years later, she was working at Starbucks, and a co-worker kicked closed a low cabinet. Her head was in the way, and she got a second concussion. Much worse…

And she never recovered as expected. Her symptoms jumped around, and her doctors were confused. She has never been the same.

Oh crap

About a year ago, things got worse, and then worse, and worse…Finally, her doctor and therapist talked and concluded that something organic was going on. She had neuropsychological testing that went horribly, followed up by a PET scan. Everyone knew it wouldn’t be good, but nobody expected it would light up like a Star Wars pinball machine. Really bad news: Early onset Alzheimer’s disease

Fun fact. Concussions don’t cause Alzheimer’s. But someone who has had a concussion(s) are four times more likely to get Alzheimer’s. Two concussions have to be a part of her Alzheimer’s recipe.

And we are devastated. Just effing devastated. BIG CAPITAL T TRAUMA. And it isn’t like things haven’t been trauma filled over the last three years. My sister died of pancreatic cancer in 2023. She was supposed to take care of my parents in their old age. Pivot. They moved up North, near my brother and me. We and our families were supposed to be my parent’s support system. And then my dad got pneumonia and died, followed shortly by Captain Mommy’s diagnosis. My brother and sister-in-law have pivoted and have taken over full support for our mom, while I’m supporting Captain and Kevin.

The care team

When Kevin was in and out of the ICU, Captain’s mom was a constant support and presence. And she is again. She spends the day with Captain one to two days per week. We’d be destroyed without her. As a one income family, I need to work. (Fortunately, I have never been more skilled as a therapist. Carl Jung coined the term “wounded healer” to comment on how we all have hurt and pain. We draw on this as we help others. I’ve got my “healer hat” on.) My mother has also pivoted from someone I supported daily to someone who supports us. We speak daily.

Kevin has been a star. His life is focused on his mom, school, soccer and his girlfriend. I feel awful that his high school experience hasn’t been as expected, but he’s a mature, dedicated kid who knows that his support and responsibility are vital. He and I talk nightly after Captain Mommy has turned in. We laugh about silly stuff. And we do mental health check-ins. And he’s ok. His grades are the best they’ve ever been, and he just won the monthly award at school for being a person of character who helps students and teachers. He just does his thing, and I know I can count on him to do whatever I ask, even if it means he has to make sacrifices.

My new reality

Countless people asked me how I’m doing. I’m honest, and my answer is along the lines of, “I’m absolutely fucking shattered.” I also know that I can’t live a life where I’m stuck in shattered. When home, I’m upbeat and funny 97% of the time. Captain Mommy laughs freely at my humor, so I try to be as positive as possible. We have good laughs because I don’t need new material. She doesn’t remember the first time I said it. So I’m golden.

Earlier in the week we had a fun morning, and then I dropped her off at her day program with people with Alzheimer’s. It’s phenomenal, and she really enjoys it. I felt a little upbeat as I left to start my professional day.

Then, I came upon a truck from the Sacramento Food Bank giving food to the elderly. In Captain’s professional life, she coordinated a program of high schoolers who volunteered at the Food Bank. I had a sad and angry moment. Nothing like getting punched in the face.

I gave myself two seconds and pushed down my feelings. Emotionally unhealthy, I know. But frankly, I’ve got too many challenging tasks to do. I make all the big and little decisions. This morning, I worked on a long list of personal and professional goals. and then I spoke to my wife’s doctor’s admin about programs for adults for Alzheimer’s. Then, I looked up at the shelf and figured I have about four days of granola, and I have two days of lunches and dinners cooked and ready. I need to do some grocery shopping tomorrow. I asked Captain Mommy if she used to do this, and she laughed and told me she’d do it for the entire week. So, I’ve got a ways to go.

For now, this husband, dad, friend and therapist is keeping life simple and adjusting to “Life with Alzheimer’s.” (LWA is Kevin and my term.)

Next time, Kevin is going to write about his experiences with LWA. I’m looking forward to it…

Until next time…

A little more

Something happened last night worth mentioning. (Or at least it’s worth it for me…) We needed more food, and I hurriedly popped into the grocery store for the 3rd time this week. (Tonight will be the 4th.) I was moving as quickly as possible so Captain Mommy wouldn’t be home alone for more than a few minutes. An employee pulled me aside and said, “Can I ask you kind of an unusual question?” I was moving but said sure. I figured she was going to ask about seeing me for counseling. But no, she asked me if Captain Mommy is ok. Captain wants to be transparent, so I told her that she has Alzheimer’s. She immediately told me how hard it must be, because her grandmother had Alzheimer’s and lived with her parents for 4 years. It was really hard for them. She added that Captain looks different and walks different. It was a dagger.
I swallowed my expletives and kept moving. I quickly realized that, with few exceptions, when I’ve told someone about her Alzheimer’s, people have told me about someone they know who had it. And it’s really hard. It’s very unhelpful. I didn’t dwell on it, because I had stuff to do. Got home, put on some tunes, grabbed an adult beverage and turned on the Dodgers-Giants game. Kevin cooked a delicious dinner. Captain loves music and the Giants. I love music and the Dodgers. Kevin loves the Giants. Let’s go!

I’ve had time to reflect today on what she said. When my father died, people said things like, “Well he’s in a better place.” Prior to his death, I rolled my eyes at statements like this. But once he passed, I heard such comments as people expressing their caring. Even though the words weren’t helpful, their sentiment was. I’ve transferred these thoughts to the woman who pulled me aside. Her words hurt and angered me, but her intent was to show caring and empathy. I’m going with this.

Let’s be Grateful everyone!

In closing, people may wonder why I’ve shared this. On one level an author once told me to write what I want. If people like it, they do. If not, they don’t. But much more importantly, I’m sharing because we as a family are entering a new phase of life. And in many ways it’s going well. We’ve never been closer. As Captain Mommy said, “I think you should talk about it. It’s my reality, and there’s no reason to try and hide it or pretend otherwise. People might find this to be helpful.”

Thank-you for reading this! It means a tremendous amount to me and my family…