Dementia is…

Evil

Cruel

Unfair

Wicked

Ruthless

Merciless

Unrelenting

Wrecking ball

These are the words that would rush out of my mouth if I were ever somehow locked in a dark room, strapped to a chair and forced to play dementia word association. You could pick any bleak adjective or metaphorically fitting noun you’d like and it’d work just fine.

There have been bits of beauty and happiness on this journey with Mom too. Moments like this or this, and hopefully many more to come. After all, I see helping Mom find joy and laughter and purpose as the primary part of my job as her caregiver.

But I’m not writing about those tonight.

Dementia is a nightmare

Stomping out the little sparks of happiness is the sheer and vast darkness of the nightmare itself.

It’s most acute for Mom. She’s the one living with the devastating impacts of dementia minute to minute and day to day. The final third of her life has been robbed, and with each passing month more and more of her independence is taken. How this feels for her is unimaginable to me.

She’s the main character in the plot and somewhere deep down in a part of her that I no longer have access to, she knows it’s only going to get worse before it ends. I know it too.

This singular thought keeps me up at night with such a painful flavor of hopelessness that my skin crawls with a ‘nails on the chalkboard’ type sensation as I type the words.

A low din of dread

My relationship with dementia is different than Mom’s. While she’s living it, I’m stuck watching it and trying to guide her through. It’s a war of attrition. Less an acute nightmare to me and more like a constant low din of dread that never goes away. Never broken and always in the background making its presence felt.

At the beginning, it was shock and fear and “how the f*&% am i going to do this”? I’ll never forget the culmination, that day in the doctor’s office when we finally got an official diagnosis. The resulting panic got my adrenaline pumping and sent me into education mode. There was little time to be sad and that worked for a while. Complete with a healthy dose of naivety and a tank full of false confidence, I was good. Until I wasn’t.

The ever-present low din of dementia’s dread accompanied my first experience with caregiver burnout. Wow was that ugly. I climbed out of the burnout hole thanks to family, friends and the amazing people at The Alzheimer’s Family Support Center of Cape Cod but the din never left.

It’s been with me ever since. An unnecessary and unpleasant reminder that there are more shoes to drop and I best not get comfortable. Because when they do drop, they tend to hit like emotional wrecking balls obliterating anything in its path.

And no matter how hard I try, I never seem to be prepared. Five years in, I’ve come to accept that I’ll never be fully prepared for any shoe dropping but it’s how I pick up the pieces that really matters.

Even still, dementia has an un-ending inventory of ways to surprise us in the cruelest of fashions. We work so hard to cover all of the emotional bases, only to be blindsided by the wretched D.

When you least expect it (even though you expect it)

Back in December, I noticed that Mom wasn’t answering the phone in her memory care apartment as she normally did. Like so many observations in our family journey with dementia, this was a slow developing one.

Ever since we got rid of her cell phone and switched to a landline for her, she always picked up nearly straight away. While cozy, her apartment isn’t a big space and she never has far to go to pick it up.

We went for experiencing a 100% hit rate, meaning every time we called (in the morning and evening) she’d answer, to maybe a 50% hit rate. That was ok I thought, thinking it was a function of the relaxed Covid related measures in her community and the fact that she was out and about being social. I was still connecting with her at least once a day so things were good.

Soon after though, Mom wasn’t picking up at all. One day. Two days. At the three day mark, I figured it was something with the phone.

Mom must have inadvertently muted the volume

The phone must have come unplugged

The phone was 20 bucks, maybe it died

I’m 3 hours away and with Covid rules (and because we’re high risk with Steve in the house), trouble-shooting with Mom’s community over the phone was the best option. So over the next couple of weeks, that’s what we did.

Then it hit me

As I hung up after leaving yet another message about Mom’s phone with Amy at the front desk of her community, it hit me.

There was nothing wrong with her phone. It was Mom.

No. That’s not true. It was Mom’s dementia and it was dropping another shoe.

She could no longer answer the phone. Physically she could. Cognitively, she couldn’t initiate the action. Dementia’s low din of dread was deafening now and I was thrust fully into the nightmare.

I pulled my car over and sobbed. I was prepared for the lack of recognition, loss of memory, confusion and seemingly everything else. When things like that happened, they were sad. Heartbreaking really. But not like this, because I was at least somewhat prepared for those.

By prepared, I mean they had at least crossed my mind as possibilities or likelihoods in the future. In contrast, answering the phone had not. It’s such a small thing. Looking back now, it’s no smaller than remembering a grandchild’s name or recognizing your son. Either way, I didn’t see it coming.

I felt utterly exposed because until Covid is over and we can move her closer to us, the phone was supposed to be our lifeline. It needed to be our lifeline. More than a phone, it was connective tissue between Mom and me. And now it was severed.

Just another reminder

We still haven’t solved this problem but for now, Mom’s community is doing its best to keep us connected. I’m thankful for that and now can see this sad milestone in our journey for what it is.

A reminder that dementia is a shape-shifting vessel of biological cruelty.

These days for me, dementia is an unanswered phone.

I’ll add it to the list.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.