By Wendy Mitchell
Ms. Mitchell is the author of a memoir about dementia.
Sept. 7, 2018
Ms. Mitchell is the author of a memoir about dementia.
Sept. 7, 2018
“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.
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.
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.”
Wendy Mitchell is the
author of the memoir “Somebody I Used to Know.”
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