Dealing with Alzheimer’s: A Caregiver’s Personal Story

“If there’s one lesson I’ve learned that others should hear it’s this — no one needs to face this fight alone.” -Barbara Bowden

When Barbara Bowden’s husband was diagnosed with Alzheimer’s disease, she was determined to look after him.

In this article, she explains how difficult it was and how she found help from the Alzheimer’s Association.

When doctors diagnosed my husband Tom with early-onset Alzheimer’s disease we were warned it would be the toughest fight of our lives. Tom, a retired Army colonel, said he was ready and unafraid.

But looking back, I still wonder if I chose the right strategy for battle.

You see, when Tom was diagnosed I instantly became his primary caregiver and decision-maker — a position I had never held.

I knew I needed help and even wrote up a newspaper ad asking for it.

The ad read:

“Wanted: Responsible, loving caregiver with experience caring for Alzheimer’s patient.

Must be a resourceful and patient advocate, strong in body and mind, compassionate yet cunning and flexible in an ever-changing environment. Must be able to tell white lies, sing, smile, laugh, joke, cooks, clean house and patient; wash clothes daily and sometime nightly and be available 24 hours. Applicant should be agreeable but able to divert, console, distract, reassure, encourage and reinforce.

I never posted that ad. Instead, I tried to do it all myself until I couldn’t.

Every stage of the disease was an adjustment. With each new plateau, I would anxiously anticipate the next change.

In the beginning, I searched for the best treatments, studies and trials. I was determined and hopeful. Tom agreed to two clinical studies and brain donation and we worked quickly to get our business in order. But Alzheimer’s disease is relentless.

The middle stage was mentally taxing. It was a constant struggle to respect his dignity and independence while keeping him safe.

After two fender benders, Tom chose to stop driving; a necessary choice that took a massive toll on his self-esteem. He became angry and started having episodes of depression, anxiety and confusion.

In an attempt to get away from the stress and tension, we took a family trip to Florida. But when Tom looked at me on the drive home and said he didn’t know who I was, I knew it would be our last trip.

When we got home, I bought a camera to watch him when I was away from the house. We went to the gym weekly to keep him active, and everyday he would cheerfully ask where we were going.

We both kept trying.

While that stage mentally drained me, the middle stage was physically impossible. I could no longer leave Tom at home alone. I attended to his every need as I watched him lose his ability to move and be active. With each small setback I questioned whether I would be able to cope with what was ahead.

When Tom could no longer walk, I knew I couldn’t continue to care for him at home. He moved to long-term, skilled nursing care. That may have been the most difficult decision I’ve ever made, but I’m confident it was the right choice.

If there’s one lesson I’ve learned that others should hear, it’s this: no one needs to face this fight alone.

We found support in the Alzheimer’s Association. They’ve connected us to resources, research options and a network of other people who have stood in our shoes. Looking back, I’d tell others to be unashamed and unafraid to reach out for help.

Tom doesn’t say my name anymore, but he knows I’m someone who loves him. I still feel a connection with him as he searches my face for a glimmer of a memory.

I miss not having Tom remember and laugh at good times and sometimes, thinking about the future makes me sad. But I’ve chosen to dwell in the present. That’s where Tom is and that’s where I want to be.

This battle is hard, just as the doctor said, but not as hard as it once was.