Time Stands Still
“Nancy Reagan died?”
Later in the newscast, they’d be covering Nancy Reagan’s funeral. Even though Mom and I had watched the news together a few nights before when Nancy Reagan’s death was reported, she forgot.
That was pretty normal by then. I had long stopped reminding her that she knew something she forgot. Her life was minute by minute, now. And there was no point in me trying to get her to understand that. If anything did sink in, she would just forget it a minute later.
A few minutes into the news, David Muir cut to the funeral.
“Nancy Reagan died?”
The Dementia Diagnosis
The doctor’s report said, “…mild atrophy and severe white-matter ischemic change…” Mild dementia caused by cerebrovascular disease and maybe a little Alzheimer’s. Tiny pieces of Mom’s brain were dead due to who knows how many “mini-strokes” she had had over the years without realizing it. And those dead spots would never regenerate. Gone. Poof. If we didn’t take steps reduce her risk of more mini-strokes, she would only get worse. If she truly had Alzheimer’s, which is hard to diagnose, mini-strokes or not, she would only get worse.
She turned 85 in July of that year, and for a woman of her age, she was, and still is, in remarkably good health, except for what’s been going on inside her head. She could live another 10 years, easily. Maybe even 15. She comes from a long line of people who live a long time.
This is what I dread most. That her body will outpace her brain, and someday, she won’t be her, anymore. For now, she’s still Mom.
Back then, in March of 2016, I had not been able to convince her that it was time for her to move in with me. I was still a newbie to care-giving for a person with dementia, and there was still a lot I didn’t know. It was hard for me to explain to her that she needed to be taken care of when she couldn’t see that there was anything wrong with her. That’s one of the stickier sides of early memory loss. She didn’t know she forgot things because she couldn’t remember that she had forgotten anything. But I knew, and dreaded, that at some point, I would have to put my foot down, and I honestly had no earthly idea how to do it. Any scenario, any tactic, seemed cruel. She was incapable of understanding why she couldn’t live alone anymore. In her reality, she was fine and just as able to take care of herself as she had always been. It would feel, to her, like I was kidnapping her.
Hope & Disappointment
There were occasional glimmers of hope that maybe she was beginning to understand her condition. One evening, somehow, her brain let her realize that she had forgotten something she shouldn’t have. We had arranged for her to call me when she needed a ride home from playing cards with her friends at the condo clubhouse. I was waiting in her condo for her call when she came walking through the door, having gotten a lift from someone else. She was surprised to see me there, since she was still living alone at that time. I told her it was no big deal, and went home. She called a few minutes after I was home, crying and asking, “Was I supposed to call you to pick me up?” Something had jammed into place in her brain, and she knew something wasn’t right. I headed back to her condo.
I’ve seen my mother cry, but I had never before seen her sob. She sagged in my arms and sobbed, so hard she had to gasp to catch her breath. She made me promise not to put her in a home. That was an easy promise to give because it’s the last thing I want for her. She said she never thought she would lose her mind. Neither did I. This was all new territory for both of us. I never imagined my mother would be diagnosed with this horrible disease. It was not something that I had prepared myself for. Our family medical history just doesn’t have dementia in it.
Phases of Dementia
Even the word dementia just makes me cringe when I say it. Before it became such a focal point of my daily life, I thought of dementia as a complete break with reality, the vegetated state of a glassy-eyed shell of a person who could no longer function. That certainly is what advanced dementia looks like. But I’ve learned on this unwanted odyssey that dementia has phases. And although the early phases are categorized as “mild” and “moderate”, I’m honestly unsure which is worse. The complete loss of self of advanced dementia, or the daily confusion, frustration and fearfulness that comes with the slow slipping away of self in the early stages.
I did my best to soothe and calm her that night, and brought her to my house so she wouldn’t have to be alone with her pain. Even though it broke my heart to see her hurting so, I hoped this was this breakthrough I needed to allow her to let me help her.
But she forgot. The next day, I asked if she wanted to talk anymore about last night. She cocked her head to one side and stared at me quizzically. I let it drop.
There are times, however, when she tries my patience, and we are just regular mother and daughter. One day, she popped the lid off the travel mug she drinks water from and screeched in terror. Scared the shit out of the me and the cat. She snapped the lid back on the mug, and slapped it down on the coffee table like it was on fire.
“What?” I asked.
“There’s something in it!” She was coming unglued.
“What is it?” I thought a lizard. She hates lizards.
“A BUG!!!!!” Oh, Christ. You’re afraid of bugs, too?
“Get it out of here!” Yes, Mother.
I took it outside and, without looking inside the mug, I opened it and tipped the remaining water into the grass. But I didn’t see any bug in the wet grass. I didn’t know if hallucinations were part of the symptoms, but determined to check that out. I swear, I really don’t think there was a bug in her cup.
Minutes later, we were driving to Sam’s Club for some shopping, and the whole time she’s sitting there close to hyperventilating over this damn bug that might not have even been a bug. Is her house full of them? I’m sure it’s not, Mom. Are there bugs in her purse? Your purse was nowhere near the mug, Mom.
No matter how I tried to steer her mind away from the bug, she wouldn’t let it go. It took everything I had to not blurt out, “Of all the things you have the capacity to instantly forget…..”
These are our days. These are our minutes.