Aug 18, 2014

The First Thing You Feel is Guilt

I will never again watch fireworks on the Fourth of July without reminding myself of the need to be free of my guilt. Like most Alzheimer's caregivers, guilt is the first thing you feel.

By Donna StClair
Alzheimer's Reading Room

Today I Will Choose Joy

Guilt is a hard feeling to shake. Impossible maybe.

Why didn't I see the signs? Why didn't I get help sooner? What was I thinking?

On July 4, 2010, my husband Bruce and I had taken our grand kids to North Carolina's Outer Banks for a vacation. We joined our elementary school-aged granddaughters for an activity called "Blackbeard's Treasure Hunt" at a nearby state park. Bruce partnered with one child, I with the other.

The park ranger gave participants a compass and set of simple instructions, geared toward a third- or fourth-grader. Everyone fanned out down a series of trails, excited about finding the famed pirate's booty.

The older girl and I finished in short order and exchanged our high five's. We sat on a nearby bench and waited for her sister and grandfather to emerge.

And we waited. And we waited. And we waited ...

Subscribe to the Alzheimer's Reading Room

Almost 15 minutes later, Bruce and the younger girl emerged from the pathway. Bruce looked exasperated. Embarrassed.

"We couldn't find it," the younger child said gloomily.

I studied the two of them carefully. They were red-faced and sweaty in the blazing North Carolina sun. Water, I thought to myself. We will go home to the air-conditioning and re-hydrate ourselves. Surely water is the problem.


Somehow I did not--could not--process the thought that my then 59-year-old husband, a long-time defense contract employee who procured materials for the construction of nuclear reactors aboard Sea Wolf submarines, was now unable to complete a simple exercise designed for a 10-year-old.

Water will fix it.

And for that day, water was the miracle cure. By nightfall, Bruce was belly down on the carpet with his grand kids, watching a Blackbeard movie and loving every minute of it. Just a little bump on a hot path, that's all.

But of course, there was more to come. The loss of smell. The struggle for words. The change in personality.

Almost a year later, we went to our family doctor, and the first round of cognitive testing began. Low scores on everything. Clearly a serious problem. Water won't fix it this time. What to do?

Simple solution: I found a neurologist who was willing to dispute the psychologist's testing. So there!

Even as I write these words, my heart is heavy with the guilt of denial.

For all the times I chose not to see what was happening... 
For every sharp word I uttered when he failed to comprehend...

For every precious moment that was lost because I could not face reality...
Today, I am an active and involved caregiver. We participate in art and music therapies. We socialize several times each week with our core of dedicated friends. We hike and enjoy the great outdoors. When I finally got it ... I got it good.

Yet I still struggle with the guilt. And I know in my heart that I will never again see a Fourth of July firework without feeling my thirst for freedom.

It is now said that "if you've seen one person with Alzheimer's Disease, you've seen one person with Alzheimer's Disease." Without question, they are as different as snowflakes. But all of us caregivers are nearly identical in our feelings.

And the first feeling--maybe the worst feeling--is guilt.

Donna StClair
Donna StClair is a retired public relations executive and high school teacher who has been married to her sweetheart, Bruce, for almost 42 years. After some four years or more of symptoms, he is now in the intermediate stage of younger-onset Alzheimer's Disease. They remain active in their community in Virginia, where they frequent museums, historic sites, music venues, farmer's markets, hiking trails ... Donna is currently writing a book about the experiences and feelings that caregivers share, based on her personal journey and friendships with others in support groups and other programs. This is Chapter One.

Featured Articles
The Alzheimer's Reading Room (ARR) offers a searchable Knowledge Base that contains over 4,800 articles. Those article, as well as our featured articles, are offered free of charge to the entire Alzheimer's community via the ARR website.