Looking for the good after an unexpected diagnosis of rare dementia

Extended family walking on wooded path
Posted 18 February 2019 by Fallon Health

By Margaret Doyle

You never know what life is going to throw at you.

In 1968, when my sister Eileen was born, the doctors didn’t have a clue. Not much was known about Sturge-Weber syndrome back then, and they didn’t expect her to live. But she did, and she’s always been a delight. Today, she lives in a group home, goes to work, bakes and loves life. She never has a bad day.

Because of Eileen, I have a different perspective on life. If she can do it, I can put a smile on my face and do it, too. No matter what. I’ve lived my life like that. Getting up every day and looking for the good.

That was easy for a long time.

I became a teacher and worked with children with special needs. Then I became an elementary school principal. Every day I knew I was making a difference in children’s lives.

But you never know what life is going to throw at you.

Unexplained changes

Looking back, the first sign that I was slowing down happened in 2014. I had always been a good driver, so it seemed strange to suddenly struggle to park in between the lines. I went to the eye doctor repeatedly, without getting answers. It wasn’t until 2016 that it became clear—my vision was gone on the left side of each of my eyes.

It was a struggle to adapt to the loss of vision—it’s still a challenge. But there was more to it than that. Things were happening at work that were boggling me. It took me longer and longer to write basic memos, and I often had to ask my wife, Cyndy, to review them. The things showing up on paper were different from what I thought I wrote.

I imagined the Apollo 13 astronauts telling mission control, “We have a problem, Houston.” Except the problem was my brain.

Getting a diagnosis

There’s no way to be ready for some of the things life throws at you. Getting a diagnosis of posterior cortical atrophy, a variant of Alzheimer’s disease, at age 52, is one of those things. PCA is causing the outer layer of the back of my brain to degenerate gradually. There’s no treatment and no cure. We just have to figure out what we need to do to be prepared and fight it as much as possible.

Even though it’s my diagnosis, Cyndy has to live with it, too. She’s my partner in life, and I know she didn’t imagine she’d be taking care of me, not at this age. I never wanted to be a burden to her, not at any age.

This diagnosis has changed our lives. I had to leave my job. Not working is difficult. But I don’t spend time thinking about that. It’s not a choice I would have made, but I had to make it.

Preparing for a different future

We sold our two-story home in a rural area and bought a condominium in a friendly, over-55 complex in Hudson, Massachusetts, which has more services available. There are a few units available to younger people, and it's perfect for us. It’s a single level and close to everything we need. That will make it easier for Cyndy and me as the disease progresses.

We don’t know how quickly that will happen, although PCA tends to have a slower progression than other types of dementia. We are using the time to anticipate the changes ahead and prepare for them.

Why talk about it?

I’ve been telling others about my diagnosis and how it’s affecting me—everyone from my friends and relatives to family caregivers to health care professionals.

It’s a way I can keep making a difference and helping others. Not everyone who’s experiencing cognitive changes can tell you what it’s like. I hope that understanding what’s happening to me will help them be more understanding—and more patient—when they are with someone with dementia or start to experience it themselves.

How I’m different

PCA affects the back of my brain, which means it causes problems with my ability to see, to retrieve words and to process things. It can be something I know I’ve done a million times before, but that experience doesn’t help me.

I can do most things independently, although I admit it’s better for everyone that I’ve stopped driving. Most days though, if you saw me, you wouldn’t necessarily know I have dementia.

I’m slower, which can be frustrating because of the kind of world this is, where everyone’s going 100 miles an hour all the time. Some things take me longer. Getting a credit card into a slot. Figuring out my cash. Money doesn’t look the same as it did before, and it doesn’t make sense to me. And while I’m trying to see what’s on each side of the bill, my brain is yelling, “What the hell is wrong with you that you can’t do this?”

Having someone get impatient as I’m trying to figure it out—even if they don’t say anything out loud—only makes me take longer. It’s still hard to say that I need help, but I’m getting over that.

How can someone help?

What could a cashier do to help? Slow down and be patient. What can a banker do? Train employees to recognize and help people who have dementia or a visual impairment. What else? Unless I’m going to hurt myself, let me try a little longer.

The more I can do myself, the better off I am—even if it’s difficult, even if I have to take a break and start over again.

Look for the bright side

If someone you know has dementia, the most important thing you can do is stay engaged—that’s advice for you and for the person with dementia. Don’t go under a rock and hide. There’s a lot of living to do. This isn’t a death sentence.

We can sit at home and wallow, or we can live the life we’ve been given. Even though it’s my diagnosis, Cyndy has to live with it, too. We continue taking care of each other, and I’m grateful for that. We have to find the joy and make the best of this life, no matter what it throws at us.

Margaret Doyle is a resident of Hudson, Massachusetts, and a lifelong educator.

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