Jeanne Lee, of Alzheimer’s Awareness, LLC in Honolulu, Hawaii has been living with dementia since being diagnosed in 1995 at age 54 with younger-onset Alzheimer’s.
“Three years earlier, doctors diagnosed me with depression. I’d walk into their offices and cry not knowing what was wrong. And each time, they’d admit me to a mental institution,” Jeanne explains.
Imagine, as recent as the 1990s, being flustered over unexplained symptoms and being admitted to four mental institutions before being properly diagnosed with Alzheimer’s.
“You’ve been living with Alzheimer’s since the mid-nineties?” I ask, surprised.
She chuckles, adding, “Well, they think I’m also showing symptoms of PPA [Primary Progressive Aphasia].”
“How does PPA affect you, Jeanne?”
“Umm, things like, when I get lost sometimes after getting off the bus and can’t read the sign to tell Vern [care partner and dear friend] where I am. Needing to ask someone to tell me what the sign says so I can repeat those words to Vern so he knows where to pick me up.” She pauses and adds, “There’s another way, too. When I’m speaking, I get slower and sometimes my speech stops. I can’t get the words out, so I say nothing.”
Still Working while Living with Alzheimer’s
Despite living with dementia, Jeanne still works. Years earlier, she managed a restaurant at a golf course. At one time, she says, she took people on tours of the islands of Hawaii–as a pilot! She was also a caregiver. Today, she finds gratification in cleaning houses; especially, when people express appreciation for her work. But this work takes everything out of her. When I asked if I could interview her on Thursday or Friday last week, she said, “No, I work those days and by the time I return home, I have nothing left.”
Challenges of Living with Dementia
“What is the most challenging part of living with dementia?” I ask.
“When people say, ‘You don’t look like you have Alzheimer’s,’ which belittles all the effort I put into helping raise awareness.” Last month’s featured Voice with Dementia, Mary Howard Read, said the same thing.
Later in the interview, I ask the question again.
“I was elected to serve a one-year term as Advocate of the Alzheimer’s and Related Dementias Hawaii. Although the committee met a number of times, I never got a call to attend a single meeting. And it wasn’t just me. Others living with dementia who were invited to serve in their states, were ignored, too! What were we? Token committee members?”
Making the Most of Life with Alzheimer’s
And yet, Jeanne found ways to make the most out of living with her diagnosis. She enthusiastically shares the following:
- “I wrote a book so that people do not have to go through what I did before getting my diagnosis.”
- “I represented the U.S. in Barcelona in 2002 at the Alzheimer’s Disease International Conference. What shocked me was to discover that I was the only spokesperson from the U.S. who was living with dementia.”
Fortunately, more people with dementia are attending and speaking at these conferences. Thanks to the early efforts of people like Jeanne and members of the Dementia Advocacy and Support Network International (DASNI), voices with dementia are being heard.
- Jeanne’s given 368 speeches and is proud to reflect on five scrapbooks filled with appreciation letters.
- “My family is actively involved with Indiana University’s National Cell Repository for Alzheimer’s Disease (NCRAD).”
- Having served on the board of directors shortly after DASNI was formed, she now serves on the board of Dementia Alliance International (DAI).
Jeanne travels the world, but this mother of 5 is spending 6 weeks with her family and friends in 3 states–Oregon, Washington, and Utah. She plans to visit her children, 13 grandchildren, and 4 great grandchildren. She’s attending a few reunions including her 57th high school reunion, which is actually a celebration of their 75th birthdays. She also plans to attend her late father’s family reunion-camping trip.
Family and Friends Are the Reason I’m Still Here
“Without family and friends, helping me through these 21 years, I would not be here. It is very important to have people stick by you all the way through.”
Her care partner and long-time “honey,” Vern didn’t want to accept her diagnosis at first. “Then he began reading books and articles. ‘Oh my God,’ he said, “this sounds just like you.'”
“What holds you two together?”
“He is so interested in the steps I take and he’s the first one to show me the new research that he reads about. It keeps me very close to him, because I need him very badly. He’s kind and understanding.”
Thank you, Carole Mulliken, DASNI Forum Moderator, for making the introduction so that I could interview Jeanne Lee.