Tuesday, June 18, 2024 | 2 a.m.
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Tonight, as we readied for bed, my wife of 33 years came from her wardrobe with a jeweled necklace and two diamond earrings. She smiled sweetly and asked, “Remember when you bought me these our first year of marriage?” holding them up to her ears.
My eyes welled with tears. I shook my head. “No. Please tell me the story. I want to remember.”
She sat on the edge of our bed, her eyes now tearing up. “Oh darling, I didn’t mean for you to feel bad,” she said. “I love this story, how you wanted me to have them.” She described how I gave them to her when we were on a shoestring budget as newlyweds.
“I want to remember,” I said again, wiping my eyes. “I don’t want to lose all these memories.” We cried together and held each other, the consolation of a marriage of love in our middle ages. My wife has been through her medical problems too, so she doesn’t allow me to feel too sorry for myself for very long, which is a good thing.
My memory problems began in 2022, but didn’t become pronounced or even apparent to me until 2023 while seeing patients. I finished medical training in 1997, and I’ve taken care of hundreds of patients with dementia over the following years. But when your doctor begins repeating questions he’s already asked, it doesn’t make a patient feel very confident. That’s when I needed to get medical help for myself — brain scans, a spinal tap, neurology appointments.
Finally, a neurologist told me I had Alzheimer’s disease.
I’d sent many patients over the years to the Alzheimer’s Association, the largest private, nonprofit funder of Alzheimer’s research, so, naturally, I wound up at that organization’s doorstep when I began my personal journey. It’s a great community treasure for information, advocacy and help.
I was 57 years old when I was diagnosed. Forward to 2024. Today, I check in at the infusion center where I receive my treatments. My nurse for the morning calls the pharmacy to conjure up the medicine that tries to keep Alzheimer’s disease at bay. Then, she chooses a vein on the back of my hand to insert the needle. It’s a dull sting. I receive my infusions every two weeks, so the nurses are starting to learn who I am — the “retired” doctor.
My infusion bag arrives — a clear liquid, like water. But, unlike water, each bag costs $1,019. That’s $26,500 per year — a bit more expensive than water.
I suspect infusion centers are working to figure out how to get these infusions for all kinds of diseases mixed quickly in a convenient outpatient arena where patients will feel comfortable, each “room” with its own television and lounge chair. The infusion takes an hour, and then I wait around for 30 minutes to ensure I have no side effects.
Every few months I also receive an MRI to ensure there are no microhemorrhages in my brain — one of the potential complications as the infusion pulls out the abnormal Alzheimer proteins.
The following morning, I head out to buy groceries and supplies. I’m the house husband, chief cook and bottle washer. When the weather’s nice, I ride my bicycle to my grandson’s home — staying in shape and seeing people I love. I call my old mentor in Baltimore who regales me with his latest poems. I play piano and guitar, striving to keep on the beat with my internal metronome. I look healthy and I sound healthy, but my brain tires easily. I forget things. I set reminders on my phone to remember this and that.
Some days, I want to cry about my loss. But I am so fortunate to have my wife, grown children and my friends to help me along, to stay on task, stay positive and stay engaged.
June is Alzheimer’s and Brain Awareness Month. The Alzheimer’s Association’s message is, “Take charge of your brain health.” I couldn’t agree more. While there is currently no cure for Alzheimer’s, we know more than ever about brain health, risk reduction and ways to live well with the disease. That is what I am trying to do — live well with the disease. If you are like me, navigating Alzheimer’s, or have a loved one in your family who is, contact the Alzheimer’s Association at alz.org or call their 24-7 helpline at 800-272-3900.
Brent W. Beasley is a retired physician who lives in Kansas City, Mo. He wrote this for the Kansas City Star.
