PHX New Times: Living Where Everything Is Forgotten: A Mother and Son's Struggle Toward a "Dementia-Friendly America"

Robrt Pela penned a deeply personal, moving, and very honest feature about his life as a caregiver for his mother and our efforts to make Tempe "Dementia Friendly." 

This is a long read, but one that I can't recommend highly enough.

The article shows in very blunt terms both how important what we are trying to achieve is and how immensely difficult the challenges we face are.

The very idea of a dementia-friendly world strikes me as preposterous. I can’t convince the respite care workers I sometimes hire, who are supposedly trained to deal with the memory-impaired, not to tell my mother that her husband died three years ago. She thinks she’s 9, and little girls don’t have husbands. It upsets her to hear otherwise. Some of the medical professionals who look after the Duchess, when told she has Alzheimer’s, speak more loudly, as if volume adds clarity — even though she’s not hearing-impaired. If I can’t get my mother’s own children and grandchildren to take part in her care, how can Tempe expect to sell sensitivity training to a reluctant universe of clerks and bankers and doctors?

Robrt spent time with our Action Team leader Jan Dougherty:

“We’ve got a long road ahead of us,” Jan Dougherty tells me when I call to ask about this Dementia Friendly thing. I know Dougherty in her role as director of family and community services at Banner Alzheimer’s Institute in Phoenix, where my mother is a patient. BAI is partnering with the Tempe project, and Dougherty is the liaison between the two.

“Right now, dementia is where cancer was in the ’60s or HIV was in the ’80s,” Dougherty explains. “People are really just starting to talk about this disease openly. There’s more education on the stupid Zika virus than there is on dementia. But we have to start somewhere.”

And Mayor Mitchell:

Mitchell plans to begin networking with Tempe’s neighborhood associations, which he says are the best in the state, to get the word out about dementia. His grassroots strategy smacks of boosterism; how can people whose job it is to host home tours and throw pot lucks launch a dementia education initiative?

“One person at a time,” Mitchell replies. “Fifteen hundred people in my community have dementia, and I need to get the city educated on how to help them.”

Okay. But would Mitchell have climbed aboard the dementia-friendly bus, I ask, if his own mother didn’t have Alzheimer’s?

“I don’t know,” he answers. “Would you be writing a newspaper article about it if your mother didn’t have that same disease?”

Touché, Mayor Mitchell.

Robrt's deep understanding of the challenges caregivers face every day keep him understandably skeptical about the prospects for success.

The next day, I attend the council meeting of the Senior Lawyers Division, where the subject is dementia and what to do about it. Mayor Mitchell gives the welcoming remarks; his father, former congressman Harry Mitchell, delivers a moving speech about watching his wife, Marianne, slip away from him. At the end of the day, Dougherty gives a helpful presentation about Dementia Friendly Tempe, during which the fellow sitting next to me, whose nametag tells me he’s George, leans over and whispers, “It’ll never work.”

“I don’t know,” I tell George afterward. “These people are working pretty hard. And I like the idea that someone is out there training people how to speak to my mother and other people like her.”

George rolls his eyes. “I stopped waiting for anyone to come help me take care of my dad. I look at it this way: I got two hands, I can do the job myself. A diaper isn’t gonna kill me. Neither is giving my dad a shower. I just tell myself to look at it as a privilege.”

[...]

Right around the time my mother dumps her bowl of soup on the floor and begins crying, I give up on my list. Gratitude eludes me. I remember too keenly the vacation home I used to visit, the family I used to believe in, the writing career I once had time to nurture. There are no city-funded programs designed to return those things to me. I can see how hard people like Jan Dougherty and Mayor Mitchell are working to fix things for people with screwed-up memories. But when your days are spent asking people not to talk down to your mother, pleading for assistance from elder-care agencies, and mopping up potato soup, it’s hard to believe in a dementia-friendly world.

Like I said, the article highlights why this is so tough and why it is so important.  In order to succeed we will need your help.  Please take the time to volunteer or share your own stories in the comments below to help inspire others why getting involved is so important.

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