A eulogy for my mother, whom is very much alive physically.

It’s 2016 and I’ve just heard the diagnoses of early onset Alzheimer’s. You could probably imagine the surprise on my face that would exist if I hadn’t already known, suggested, or otherwise been present for much of the disease already. In 2016 she was 58. Alzheimer’s is generally present in the older populations of our world, not the young, and by 60 years old you’ve lived over half your life. There is a road ahead, paved in an overwhelming amount of grief, and flooded with memories that flash in my mind which I won’t get to share with her. Alzheimer’s is a thief.

My mother expecting her ride for a trip a month away at 10:30 at night.

Torn from my children’s lives, is her being grandma, like my grandma’s were to me. My parents divorced when I was 7 years old, and often I could be found at one of three sets of grandparents after school or on a humid Michigan summer afternoon. They were like second parents to me because they were there half the time my parents were. My sister and I visited their homes, often spending nights even on weekdays, because that’s how it worked for my mom, a single mother in the 90s. My children won’t get to experience those fun nights I had, each family a little different than the next. Some would share dessert, some had healthy foods, all would give their love like we were their own. I can’t hold those memories for them. They won’t be babysat by her, I can’t expect her to make food for them, and I wouldn’t put her in a position to care for them. I can’t ask my mother to pick them up from school because she can’t own a car, she would lose it. The disease stole Grandma.

Working in the advertising industry she would eventually move on to the talent industry, but sticking with payroll, as she knew the in’s and outs of it. She had opened a new office with her manager for the region many years ago that would grow into a major office for the company. She would end her career in payroll, but against her will. The disease took it’s toll, and it was only 2013 when she lost her job due to troubles that came of it. The manager she had opened the branch with had begun documenting her decline in work quality and the issues that arose from being unable to perform work tasks. The disease stole her job.

If you know someone with Alzheimer’s, you know they’re all a little different in terms of how severe their disease is. It’s a personal disease, as each sufferer experiences it in a different way, at different times, and at a different severity. For my mother, short term memories don’t last, so she’s either asking you the same thing, or she’s telling the same story she told you 5 minutes ago, or inquiring about something she has in her hands. Sometimes it’s less than 5 minutes, sometimes she’ll leave a room, pick something up, ask you about it, set it down, walk away, come back to it, pick it up, ask you about it, set it down somewhere else, and the cycle may repeat. The disease stole half of her life.

Sometimes she’ll even make something up in her mind, a story, and relive it as truth, much to the confusion of the other party. We went out to dinner for her birthday, my family and her, and she proceeded to talk to the waiter and explain to him that he was her favorite and she had his great service before. He stated he had only worked there two weeks but hadn’t remembered her. It was a bit awkward but he took it in stride and went along with it. At times it’s led to interesting experiences which I attempt to handle with dignity for my mother, and hoping any other parties to it understand or just feign interest. She doesn’t make good conversation and she laughs a lot, which is her mechanism when she doesn’t know what to say or respond with. The disease stole her social life.

Sitting in her spot, where I usually find her.

Alzheimer’s patients don’t wear tags that say they have the disease. When I take my mother out, she will often ask someone the same thing once or twice. She may process that you responded, but that response flutters into a void. I sometimes imagine there’s a monster living in my mothers skull, nestled tight against the bone, resting it’s ears against hers, ingesting each word spoken to her like a tiny morsel of light that it seeks to escape into but can’t because it’s trapped in the dark recess. The disease stole my mom.

I find myself seeing the darkness she’s stuck in, as a prison of the disease. She’s tortured by it, the frustration coming out at intervals after a long day, trying to get ahold of my sister, my aunt, my cousin or myself. Leaving us voicemails seeking an answer that won’t feed the appetite of the monster even if we served it on a silver platter. As you think the voicemail will end she now believes she’s speaking with you, and gets all the more frustrated that you aren’t responding, thinking that you’re playing a game with her…

as if you were a child hiding…

not speaking a whisper…

That’s how long her memory is now, the length of a whisper.