Social Isolation + Alzheimer’s. Now I’ve Seen the Impact.

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There it was on the bottom of the second page in the stapled stack of photo copies I’d just been given, in big bold font: Social Isolation. The bold type-face was followed by a generic definition, a description of the dangers and references to helpful resources for new caregivers to tap into.

We’d just wrapped up the doctor’s appointment in which Mom was formally diagnosed with Alzheimer’s Disease. The doctor left the room, the nurse collected Mom and I sat shell-shocked.

Just me, the white walls, headache inducing bright fluorescent lights and the black and white and kind of blurry reference material. Taking a minute to absorb what I’d just heard and collect my thoughts, I flipped through the pages.

I remember focusing in on the social isolation blurb on the second page. Distinctly. The memory is so vivid because when I read it, I took it as a positive. The only positive. It was the one bright spot in the whole stack of paper I was holding on to. Mom was social. I’ll never need to worry about that , I thought.

The Danger

Another reason I remember seeing the words social isolation in that packet so clearly was surprise. Knowing how social Mom was and the strong network of friends she had (still does by the way), I’d naively never given the perils of isolation a thought. I was surprised by what I read regarding its prevalence as a public health issue in older adults and startled by the severity of its impact.

As I became more educated, I learned that social isolation affects (from AARP) and that health risks associated with prolonged isolation are equivalent to smoking 15 cigarettes a day according to a 2015 study from Brigham Young University. 15!

This was no doubt frightening to read but I continued to use it as a source of positivity. It was one part of this big scary equation that we had figured out.

Mom has lots of friends and they’ve continued to show up as her symptoms have progressed.

I moved Mom to assisted living for her to get the support she needs to give her the built in social network she requires to thrive.

Since I added the job title of Mom’s caregiver to my resume, I’ve been wrong more than I’ve been right on decisions small, medium and large. But I was right about this one.

In assisted living, Mom got the support she needed (and still does, although now in memory care). More than that though in the early days, she got the social connection she craved. From her fellow residents and staff alike.

She thrived. The combination of support and connection offered by communal living suited her beautifully. Until recently.

Dress rehearsal

Our world looks drastically different today than it did in February. I remember sitting eating donuts with my daughters on a frigid Sunday morning when I clicked on an email from Mom’s senior living community.

The email was detailing steps the community was taking to mitigate a gastrointestinal bug making its rounds through the building.

Communal dining was being temporarily suspended.

Regular engagement programming was paused.

Visitors were going to be limited.

The changes were expected to last maybe a week or so. Mom seemed ok. Annoyed by it sometimes, oblivious to it at others. It’s just temporary and it will be alright, I thought.

And it was. Things went back to normal a couple of weeks later.

Yet looking back, those two weeks in February were merely a scaled down dress rehearsal for what was to come.

A different world

The month of March took a sledge hammer to daily life as we knew it. For all of us. Mom’s community acted quickly and decisively and I’m thankful for the decisions they made as the threat of Coronavirus became real to us here in the U.S.

The building was closed to all outside visitors (including family)

Residents could no longer leave the building barring some serious extenuating circumstance

Mom and all residents were back to eating in their rooms

Regular resident engagement activities and social gatherings were cancelled

Their swift action kept Mom and her fellow residents safe. The difference this time though, was instead of temporary it was indefinite. The social fabric of the building evaporated overnight. And the real cost of that, for Mom, would show itself over time.

I’ve been awed by the community’s best efforts to keep residents engaged and connected over the past 3 months. It has been heroic. Truly. But despite all of those best efforts, social isolation and the associated loneliness has ravaged Mom.

It has utterly transformed her.

Mom…after social isolation

As of this writing, Mom is as unrecognizable to me as the world we’re living in today.

She’s angry. Depressed. A different kind of confused. More delusional than lucid. And suspicious.

Could this be strictly coincidental progression of her Alzheimer’s? Maybe, I guess. But I don’t think so. In my heart I fear that this is sadly a new Mom, post-three months of social isolation. And there is no greater symbol of this new Mom than her new mask.

The vitriol she exudes when someone gently reminds her that she needs to wear it, or heaven forbid tries to help her keep it on, would scare me if it didn’t make me so sad.

I’m a nurse, I know how to wear a mask.

What, you think I’ve never worn a G*& D#@ mask before?

It doesn’t need to be above my nose, what the h*&^ are you talking about?

It’s to f*&^% hot, how do they expect me to wear this thing.

Don’t touch me, I can do it.

The words are one thing. Her tone is another. And the look on her face when speaking, an ugly combination of hatred and defeat, rounds out the picture I’ll never be able to unsee. It’s a soul-crushing level of disdain to witness. For the mask, yes. But the mask is just a proxy for something bigger, much bigger-her disease, her waning will to fight it and what it’s done to her life.

She takes it all personal, thinks I (or whomever asked to help her) is out to get her or trying to punish her. I know it’s the disease and not her. But that doesn’t make it easier.

We keep going

Yet another heartbreak on this long walk with Alzheimer’s. And in this case it’s actually a gross 1–2 punch of the disease + social isolation for the knock-down.

Knocked-down. But not out. We’ll get up, dust ourselves off and keep going with a newfound fear of social isolation and the damage it can do.

I’d read about it before. I just didn’t think it would apply to us.

But now I’ve really seen its impact.

Originally published at on July 7, 2020.

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