Being with Mom

Jann Arden writes about her own journey as a family member caring for a loved-one with Alzheimer’s disease.

I hate what’s happening to my mother. I don’t know what other word to use. I hate it.

Often, I feel down and confused and filled with angst.

Alzheimer’s is a thief, and it is stealing my mother, one memory at a time.

Eight hundred thousand people are affected with memory loss diseases in Canada alone. That estimate, they say, is probably low — Alzheimer’s has a lot of shame and loss that encircles it, so people are reluctant to talk about it or discuss it at any length. We are embarrassed by it.

I know I was. And I still am, in many ways.

Why am I embarrassed by my mother’s illness?

I think it’s because I have a really hard time understanding how it makes me feel. I lie in bed at night and stare up at the ceiling, hoping that some kind of clarity will pour into my head. I spend a lot of time swatting away the fear and the anxiety and the grief that come with losing someone you love, an inch at a time.

Alzheimer’s is cruel. Everybody knows that. If we don’t have our consciousness, then what are we?

My mom was a vibrant, smart, funny, wonderful woman. When I was growing up, every kid I ever brought home after school for snacks and an episode of Star Trek happily proclaimed, “You have the best mom!”

I knew I did. She was empathetic and understanding and easy to talk to. My friends would often pour out their problems to her over one of her “Crock Pot” suppers, and, by the time they left to go home, they were a little bit taller. That made me so proud.

Mom was always kind and accepting of everyone, no matter what they’d done or where they came from. She was fair and understanding and tolerant — all things I learned to be, because of her. It always struck me to the core of my being how non-judgmental she was. “You don’t know what people have gone through, Jann,” she’d say. “You can’t make assumptions.”

When it first started happening, the loss of her memory, I was so judgmental.

I was wound up in a tight ball of anger and accusations. I corrected my mom all the time. I battled with her hour after hour, hoping beyond hope that she would snap herself out of whatever she was going through. I honestly thought it was her fault that all of this was happening. It must have been something she’d done, or something she wasn’t doing. I kept being the memory police, trying to jar her recollections, get her “back online.”

I see now how naive I was,
how misinformed and how completely unaware I was of what the disease was doing to her, each and every day.

Seeing her being unkind was probably the most shocking thing for me these past few years. That steely glare that seemed to burn into the back of my head — I felt it etch itself onto the inside of my skull, and it made me want to sit in the middle of our gravel driveway and cry.

It wasn’t her. It wasn’t the person I’d known from the beginning of time. She seemed possessed by some sort of demon who made her do and say unthinkable things.

“I hope you get Alzheimer’s,” she’d say flatly. “You’re a terrible person to do this to me — for having those homeless women flop themselves in my house, going through my things and robbing me blind. I would never do this to you!”

Every day, month after month, she’d talk about her caregivers like they were literally the devil’s spawn: crazy and untrustworthy, dirty and dishonest. She didn’t want them in her house, and that was the end of it. She’d nearly spit the words into my face; her anger was that palpable.

I had never seen my mother express this kind of rage, ever. Even toward my difficult father, who was an alcoholic most of the time I was growing up. He just got the silent treatment — slow and steady and tedious. I, on the other hand, was receiving the full-blown wrath of my mother’s alter ego, and my heart kept breaking into tiny shards of glass that I doubt I will ever be able to reassemble.

Alzheimer’s is ugly.

Alzheimer’s is persistent.

Alzheimer’s is patient. It doesn’t care how long it has to linger; it will wait in the shadows until it has taken every single memory and recollection and shred of consciousness from the human being it has moved into.

There are many levels, stages and symptoms for Alzheimer’s, and my mother’s most volatile symptom is her paranoia. It is as fierce as it is defiant.

“They’ve stolen my big bag of change! There were thousands of dollars in there! That was my money and now I have nothing!”

She repeated that sentence for two solid weeks, over and over again every few minutes, and I wanted to throw myself off of a very high bridge.

Why? Because of one stupid reason: I refused to “go with her.”

I was a fool.

I was paralyzed with fear.

But I can truthfully tell you, that’s not who I am anymore. There is a light at the end of the tunnel, and it’s not a train coming.

I came to realize I had to learn and change and accept what was happening if I was ever going to be able to find any kind of peace or calm in my life again. I had to let go of who she was and start figuring out who she was becoming.

I’ve learned a lot about myself because of Mom’s illness. They weren’t easy lessons, but the good ones never are. My shoulders are broader than I thought they were. My heart is bigger. My mind is sharper, and my laugh is louder.

Surrender is never easy, but it can be liberating, indeed. Especially when it comes to dementia and Alzheimer’s. The very moment I chose to go where she goes, everything changed for the better.

Now, if she sees people in the yard, I see people in the yard. If she says she drove to Germany with my dad last week, I ask her all about the time they had. I’ve stopped fighting the disease that I’m not going to beat.

My mom is happier and less agitated. She’s more compliant and jolly and calm — all because I live in the world she lives in and not the other way around. It seems so simple, because it is simple — and maybe that’s why it’s so easy to overlook.

My mom always told me that I was the only person who was freaking out, and she was right. Giving in isn’t always giving up. I’ve learned that lesson, and so I want to pass it on.

Go with it.

Surrender.

Agree.

Go where they go. You’ll be happier — and so will they.

I asked Mom if she thought she’d ever forget me and she paused in her tracks as we were wandering down our road one morning. “Well,” she said, “my mind might forget you, but my heart won’t.” [ ]