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It was only the second time we’d played tennis together when Lauren blurted out, “My husband Michael was just fifty-eight when he died.” She had won a fierce point with a put-away volley and her tone sounded matter-of-fact. I froze, taking stock of my partner. Lauren looked mid-sixtyish, outgoing, attractive, energetic. I had no idea that her husband was dead or why she suddenly felt the urge to talk about him.

“What happened?” I asked, nervous about her response.

“He died from early-onset Alzheimer’s.” It was two-and-a-half years ago, she said. “I think about him every day.”

After the game, we sat and talked for a few minutes. I told her I was a writer and that I’d love to find out more about her personal experience with early-onset Alzheimer’s, to share the information with others. My eighty-six-year-old father has dementia too, I mentioned, although its import seemed somehow diminished in light of her loss.

What I didn’t say was that I’d remarried only eighteen months earlier and my husband was sixty-one. Although his brain function seems just fine, his father had died from Alzheimer’s and his mother had begun developing dementia symptoms before she died. My own father was in the late stage. The scary fact is that every sixty-seven seconds someone in America develops Alzheimer’s disease. Lauren’s story is all of ours.

The romance

We met for coffee a couple of weeks later and chatted easily about her life and love affair with her husband, and not so easily about his illness and death. “I remember the first time I saw him like it was yesterday,” she said. “I was twelve and he was fourteen. It was during recess in the gymnasium. I said, ‘Wow! Who’s that?’” Three years later, at a New Year’s Eve party, he came up and kissed her. “He was the best kisser,” she said, smiling and misty-eyed at the memory.

They married when she was twenty. She’d gone to junior college and was an administrative assistant at a big New York City ad agency. He was determined to go to law school, working evenings in a liquor store to pay for it. Six years after graduating from an Ivy, he’d become partner at a firm, specializing in international and corporate law. She was a stay-at-home-mom to their four children. They became grandparents and remained close to their own parents. In 1997, Michael left the law firm and opened his own asset management consultancy. Life was good. The couple divided their time between New York and South Florida.

“We had a great friendship and a passion that never died,” Lauren said. She pulled out her phone and showed me a couple of photos of her husband. He was, as she had described, tall and handsome. “He was my rock. My best friend and protector.”

Strange symptoms

But in late 2004 Lauren noticed that Michael was experiencing some peculiar slips of the tongue. “I thought they were flukes,” she said. “He tried to cover them up.” He occasionally mispronounced familiar words and asked an awkward question after a friend told them a tragic story. In January 2005 he fumbled for words at a condominium board meeting. “Speech problems — Michael?” Lauren said, still sounding disbelieving. “He’d studied Latin. He had a great gift for language and perfect grammar. I knew something was wrong.” He’d been on blood pressure medication since he was twenty-two. Maybe he’d developed a new side effect?

Standing at more than six feet tall, Michael’s posture had always been erect. But now Lauren noticed that his neck appeared to be jutting forward. Was this just how men aged? She began watching other men walking down the beach. Their necks seemed fine. Another clue that something was amiss.

In mid-April that year, Michael asked her what her plans were for the next day. “He always listened to where I was going,” she said. “I was his focus, even when we had four kids at home.” She told him and he nodded. Fifteen seconds later, he asked, “What are you up to tomorrow?”

Because he was still in his fifties, Lauren and Michael didn’t rush right away to the doctor. Who thinks of dementia when you still feel like you’re in the prime of your life? But by October 2005, they were playing doubles and he couldn’t keep track of the tennis score or who was serving.

The diagnosis

They went to see a neurologist. Michael refused some diagnostics but agreed to an MRI and a PET scan, an imaging test that uses a radioactive substance to see how organs and tissues are functioning.

The neurologist’s conclusion: Clear evidence of neurological degeneration in the lobes, most likely due to Alzheimer’s disease.

“Michael never expressed any emotion about the results,” Lauren said. “He always said, ‘It’s not going to affect me. I’m going to live ‘til my eighties.’” But the disease progressed at a steady and devastating pace. By the end of 2007 he was forced to close his business.

Lauren grappled with her limited financial knowledge. “I had gone from living with my parents to having Michael take care of me. I didn’t know anything about our money, insurance, taxes. That was a huge anxiety.”

One of their children had built a successful career in finance and helped Lauren understand her complicated assets. But for the most part, she and Michael kept the illness a secret from other family members and friends. “I told my daughter and my mother,” she said, “but few others until 2008 when I called our friends and told everybody.” They kept it hidden, she explained, because of the stigma attached to Alzheimer’s. “I was embarrassed and ashamed. I didn’t want to be put in that category. But I was protecting Michael’s dignity too. He was a private, accomplished, confident man. Watching him deteriorate was a terrible thing.”

The decline

Lauren cared for him in their home for as long as she could. Michael’s speech became disjointed. He refused to shower or change his clothes. He still sat at his desk each day but was unable to function.

By January 2009 it was time to move him to an assisted living residence. Lauren mourned the romance they’d shared, their travel, lovemaking, affection and conversation. “I missed lying next to him in bed,” she confided. And while she did sometimes hold Michael in her arms, he never held her back. When she brought him home he went to the bathroom on the rug. He had a seizure in 2009 and Lauren admitted that she wished for his death. By 2011 he’d become aggressive with her. After being admitted to the psychiatric ward of the hospital where they over-sedated him, he became unresponsive. Then he fell and broke his hip. Michael died in a nursing home two weeks later.

It was eight years after the symptoms emerged, precisely the lifespan experts predict for victims of early onset Alzheimer’s.

Advice and resources

Today, 200,000 Americans suffer from the disease, just five percent of all Alzheimer’s patients. Yet because Alzheimer’s that occurs between the ages of thirty and sixty-five is relatively uncommon and because it is difficult to detect, many suffer for months or even years before diagnosis. There is no cure but there are treatments. Online resources (the Alzheimer’s Foundation of America and the Alzheimer’s Association are great places to start) are available. The symptoms often mirror those of other forms of dementia: memory loss, new difficulties with speaking or writing, confusion, to name just a few.

Lauren’s best advice to others who may be confronting early onset Alzheimer’s is simple: Face it if it’s there. As a patient or caregiver, stay active, keep your friends. Keep family close. And while she has resumed a full and active life, she feels Michael’s absence keenly. “Every day I cry,” she admitted. “It doesn’t paralyze me. I hop back up.” She goes out on dates. She moved into a new condo in South Florida but kept their home in New York.

“I still see him coming down the stairs,” Lauren said, sounding comforted by the vision. And while she has cleared out his closets, she held onto his favorite navy blazer, loafers, ties and shirt. “I’ve only had one dream about him these last two years,” she said, dabbing her eyes with a napkin. “He kissed me. I felt his lips. But he’s gone.”

 

 

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