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What it feels like to find out you have Alzheimer’s

Kim Martin

I had been noticing something was different about me when I, a lifelong reader, started avoiding reading instructions - recipes, manuals, long emails. I figured I was getting kind of lazy. If I tried harder, I could read those instructions.

Then one day, I received an email from a genetic testing company with my profile. I had forgotten I ordered this. I knew pretty well where my ancestors had came from, but I was curious to see if there were any hidden family secrets. I even paid the extra $50 for additional health information. Of course, I knew I was healthy, so I could kind of gloat about this at age 69.

I clicked open the email and, yes, I was right all along. I am mostly of Germanic and British descent. I then went to the next page to regale about my live-forever genetic health. Red print on the top of the page got my attention. APOE-4. I didn’t know what that meant. I had to research it. APOE-4 indicated that I have the highest possibility of getting late onset Alzheimer’s. This was surely a mistake.

But wait. There was no Alzheimer’s in my family, as far as I knew. This report was either inaccurate or I was on the good side of the probability. Late onset must mean over 85, at least.

“Look at this,” I said to my husband. We both shrugged it off.

Over the next few days, this news started to pick at me. On the Alzheimer’s Association website, I saw I had been experiencing quite a few symptoms. For example, late onset can begin as early as age 65. I put together bits and pieces of moments when I thought I had been lazy or scattered. My usual calm, mellow heart felt like it was squeezing me. My usual happy-go-lucky self felt scared.

In that moment, I knew. I have Alzheimer’s.

I decided to find out for sure. A couple of months later, I went to the Mayo Clinic in Scottsdale. A neurologist suggested I get further testing. I waited for the results, knowing what they would be. Despite my husband’s resistance to jumping to conclusions and against my usual optimism, I decided to prepare for the worst news. And I got it. The neurologist confirmed the likelihood that I have the disease. Oddly, I felt a sense of relief.

I no longer had to persuade my husband that my “faulty brain” was real. Now, I had a reason to step away from obligations that had become difficult and taxing. I could also forgive myself for what I called my laziness.

I became catatonic, which had never been my nature. I moped. For several weeks, I felt so sorry for myself, so fearful about my future. I wondered what people who knew me would think, how they would treat me. But this wasn’t me. I had to get off the couch and get things done.

I went into overdrive. Decisions had to be made while my brain was still working. I wasn’t thinking about a bucket list of places to travel to; I was thinking about revealing myself to family, friends, and letting my husband and children know my intentions as the disease progressed.

In this column, which may get kookier as the disease advances, I will share my journey with the intention of normalizing – and humanizing – living with Alzheimer’s. Please help me maintain my grace and and humor. The number of Americans with Alzheimer’s is growing fast. About one in nine, age 65 and older, has Alzheimer’s, according to the Alzheimer’s Association. You know people now who have this disease. Ask them how they want to be treated.

Kim Martin and her husband, Steven Phillips, split their time between Hesperus and Durango. Martin is a former instructor of Asian history, writing and comparative cultures at Fort Lewis College. Her next column will appear on Saturday, Nov. 5.