I Had Alzheimer’s. But I Wasn’t Ready to Retire.
“How long have you got?”
This is what my boss asked me when I informed him, in July 2014, that I had early-onset Alzheimer’s.
I had a file an inch thick with suggestions for how I would be able to keep my job as an administrator with the British National Health Service, one I had loved for more than 20 years. Whether out of panic or ignorance, my manager didn’t see it that way. A date for my early retirement was inked into his calendar; I would leave eight months later due to “ill health.”
I was 58 when I learned I had early-onset Alzheimer’s. For two years, I had been experiencing short-term memory loss. I sometimes had difficulty finding the simplest of words — I once forgot the word “and” in a meeting — and I’d been struggling to concentrate. While the diagnosis made sense to me, it was devastating.
Still, I hadn’t expected it would sound a death knell for my employment. I had new challenges, but I was still a capable employee who brought, I believed, a lot to the table. Besides, I worked for a health system that prided itself on understanding a patient’s needs. But here it was forgetting to extend the same compassion to an employee.
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People are living and working longer than ever, and that means the incidence of people in the workplace with early-onset dementia will increase. In Britain, more than 40,000 people under the age of 65 have dementia. In the United States, there are an estimated 200,000 with early-onset Alzheimer’s.
Employers can’t just write them off. Loyal employees are a valuable resource. They’ve been trained (presumably at the expense of their employer) and have probably, in turn, trained others. They have a valuable understanding of their jobs. Employers need to realize that knowledge doesn’t just disappear overnight; this is a progressive, and often slow-moving, disease. I was still the same person I was the day before I received my diagnosis. I just needed to tackle my job — and my life — in a different way.
In the time I was given to stay on at work, I made adaptations. It turned out that my colleagues were much more understanding than management. They took the time to think and talk to me about what support I needed from them to keep going.
We got creative: They created a color-coded Post-it note system, with each color denoting a different team member, to help me remember whom to get back to on which project. They also knew to email me questions instead of popping their head into my office and expecting an immediate answer.
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When I worked from home, the team would contact me only at prearranged times so I would know when I’d be interrupted. I’d set an alarm five minutes before that time, which alerted me to finish any task I was working on and prepare for the incoming call. When I was no longer able to recognize voices on the phone, email still served us well. Or they waited for me to be in the office; face to face and one at a time, I could manage things better.
I recently read about one woman’s happier experience with her employer, the British supermarket chain Sainsbury’s. As her dementia took hold, her managers worked with her, cutting her hours and duties where appropriate. They realized that she still had a contribution to make, even though it might have been a dwindling one. Her son praised the company on Twitter, writing that his mother’s “sense of self-worth and pride has undeniably helped with aspects of her Alzheimer’s.”
I no longer work for the National Health Service, but I still have time and energy to spare. I now work with several dementia charities and support organizations, and regularly speak about my experience with Alzheimer’s disease to audiences of doctors, nurses and caregivers. I try to communicate all that we patients still have to contribute to society. It feels good to have my opinions valued and my story heard. It has lifted my spirits, and I believe my packed schedule keeps the disease at bay.
I look back sometimes and wonder how things could have been different if my manager had really talked to me, if he had leaned across his desk and said, “Wendy, you have always been an asset to my department; now it’s my turn to help you.” How much longer might I have been able to keep working? What else might I have gone on to achieve?
Had I been given a chance, my response to “How much time have you got?” would have been, “I’ve got as much time as you will give me.”
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