I first met Ann Mickow when we were both part of a loosely knit, tri-state band of 20-something merrymakers who spent summer weekends congregating at Nitty Gritty Dirt Band concerts across the Midwest.
At the time, she was a translator for an international law firm based in Minneapolis, living in a cozy home in Edina that served as a refuge for her friends when real life took to chafing. Having lost a brother to a drunk driver, she was also our constant designated driver — the person who could always find her way back to the hotel no matter how tiny the town or how dark the night.
Some years later, Ann opted to trade her big-city life for a farm an hour’s commute south of the Twin Cities. Soon, she was joined by some llamas and then alpacas. Then a few chickens. Then many. And there, alone, Ann cared for them — and often her friends, when life got to be a bit too much.
A few years ago, I became sole caregiver to my severely disabled adult daughter after her dad decided his own life should take precedence — about the same time Ann became sole caregiver to her Alzheimer’s stricken mother after deciding no nursing home could do the job as well.
And the band played on … this time, without us.
Ann’s mother, Josephine Mickow, age 78, is one of an estimated 5.2 million Americans now living with Alzheimer’s dementia. On May 10, she is also one of seven whose stories make up The Memory Loss Tapes, the first of four primetime specials that are the heart of HBO’s latest groundbreaking documentary series The Alzheimer’s Project. And if you’re wondering what brought big-city producers to the Minnesota prairie — well, that’s a work of art.
Actually, lots of them.
As Josephine’s condition deteriorated, Ann left her job to preserve the independent, nature-loving lifestyle she is adamant illness will not steal from her mom. Socially isolated and deprived of a lifelong wanderlust, she began keeping an online diary of life on the farm, her burgeoning skills spinning the fiber from her little herd of camelids — and stunning photos of the artfully arranged vignettes of knickknacks and household objects Josephine left throughout the house.
Filmmakers Shari Clarkson and Nick Doob discovered the blog, and its combination of “the art of Alzheimer’s” and homespun prose proved irresistible.
The duo visited the farm for four summer days — and Josephine soon obliged her guests with a brand new work culled from dinner’s homegrown snap peas. “She doesn’t have control over a lot of things, but that she can have a control over,” Ann guesses of her mother’s proclivities. “Or it’s all so confusing in her head, but a nicely arranged plate of pea strings creates order?”
The filmmakers offered more comforting ideas. “Nick said, ‘I don’t think she’s agitated at all,” Ann muses. “‘I just think she’s just always creating.'” And they made another hopeful observation, too — this time about Josephine’s penchant for murmuring little rhythmic melodies with singsong lyrics like “hohohohoho” and “whyohwhyohwhyohwhy” that make up the soundtrack to Ann’s days.
“At one point she was saying, ‘Good-bye, good-bye, good-bye’ and they were asking, ‘Why is she saying goodbye?'” Ann explains. “I was like, ‘Oh, is that what she was saying?’ Because I don’t hear it anymore.’ So I said, ‘Well, it could be that she’s done with you guys and she’s saying goodbye to you.’ We also happened to be walking up the driveway and a car had gone by, so she could be saying goodbye to the car.
“That was an eye-opener for me. So I do listen to her more now … because she’s lost a lot of her language.”
Still, the camera captures the sorts of struggles to which caregivers grow accustomed, but outside observers could find alarming — including a daily walk to the mailbox, this time with filmmakers in tow. Josephine stopped to admire a small red stone that reminded her daughter of the agates the family used to hunt near their home on the banks of the Mississippi. Ann picked it up for her mother to admire; instead, Josephine popped the treasure into her mouth as the cameras rolled.
“We’d had an incident with a quarter in her stomach, so I was beside myself,” Ann says, her voice trembling. “She’d open her mouth and show me the stone, but she wouldn’t let me have it. I basically had to hold her down and grab it. It didn’t bother Mom at all; she just kept walking and singing and doing her little thing. … I lost it.”
Cause for second thoughts about the camera’s intrusion? Just the opposite. “If they didn’t include that, they should be fired,” Ann says firmly. “It was the perfect example of ‘never a moment’s rest.’ Because I never know what’s going to happen.”
Still, she — and the film — lingers longest on the comical, imaginative side of the woman who makes her daughter laugh each day. “To me, it’s a tribute to Mom,” Ann says. “I’m proud she is part of it. I’m proud that they were able to see what I see in her. And I hope other people will see that, too.”
About The Other Episodes:
While there is no cure for Alzheimer’s, The Alzheimer’s Project — the work of an unprecedented partnership between HBO and the National Institute on Aging of the National Institutes of Health, in association with the Alzheimer’s Association, the Fidelity® Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer’s Initiative –demonstrates that there is now genuine reason to be optimistic about the future.
Created by the award-winning team behind HBO’s acclaimed Addiction project, this multi-platform series — which includes 17 short supplemental films, a companion book published by Public Affairs Books, a robust website and a nationwide community-based grassroots outreach campaign — takes an insider’s look at groundbreaking discoveries made by the country’s leading scientists and the effects of the disease on those with Alzheimer’s and their loved ones.
Solving A Mystery: Progress Reports From 25 Leading Scientists:
Dr. Alois Alzheimer, a German scientist, first described the disease in 1906 when he discovered plaques and tangles in the brain of a woman with dementia. Little progress was made in conquering the disease until the 1970s. Today, advances in many scientific areas — from diagnostic imaging to genetic analysis — have led to an explosion of knowledge.
Solving a Mystery takes viewers inside the laboratories and clinics of 25 leading scientists and physicians who seek to discover what can be done to better detect and diagnose Alzheimer’s, delay the onset of memory loss, affect the changes occurring in diseased brains — and ultimately prevent Alzheimer’s disease.
Two years in the making, the documentary explores this complex disease, which has no single cause but develops from multiple factors that interact over many years.
Grandpa, Will You Remember My Name? With Maria Shriver
Inspired by Maria Shriver’s book, “What’s Happening to Grandpa?”, this episode tells five stories about how children cope when a grandparent suffers from Alzheimer’s — including Shriver’s own father, Sargent Shriver. The film provides different perspectives on how to react to a grandparent’s loss of memory — and how to better understand the consequences of the disease.
Alzheimer’s takes a great toll on the physical and emotional wellbeing not only of its victims, but of their caregivers, too. There are currently 10 million Americans providing 8.4 billion hours of unpaid care to people with Alzheimer’s disease or other dementias — and a full 70 percent of people with Alzheimer’s live at home, cared for by family and friends.
Caregivers is a collection of five portraits, each of which highlights the sacrifices made and triumphs enjoyed by people at the forefront of their loved ones’ gradual descent into dementia.
To learn more, visit The Alzheimer’s Project online at www.hbo.com/alzheimers