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Families living with dementia diagnosis find a place to connect over coffee and games

Care advocates in Tucson have set up 'memory cafés'; staff working within Pima Council on Aging hope to offer more meetings & education resources
Posted: 3:46 AM, May 06, 2024
Updated: 2024-05-08 16:25:11-04

TUCSON, Ariz. (KGUN) -- — It's an awesome responsibility to be someone's main caregiver if they're living with dementia. It can also feel isolating if you can't enjoy all the things you used to do together.

One community group has set up a place where families can sit down, connect over a cup of coffee and have fun.

"You leave your diagnosis at the door," advocate Harbhajan Khalsa said. "You have the opportunity to to have a cup of coffee, play some games and interact with people who literally understand what you're going through."

Khalsa and her team from Dementia Capable Southern Arizona (DCSA) helped start what are called 'memory cafés' in Tucson in 2021. DCSA works as a program and service under the larger umbrella of the Pima Council on Aging (PCOA).

Every two weeks since October last year, Teresa Shack and her mom, Lupe, have come to hang out at the café inside PCOA's office on Country Club.

Inside the Katie Dusenberry Healthy Aging Center, Shack said time flies when you have fun playing Uno and bingo.

"(My mom's) also told the staff here, 'You mean it's over? Why can't we make it longer? Why can't we have it more times during the month?" Shack said.

Making the time to come here matters when the rest of life gets busy, and Shack is not alone when it comes to caring for her mom. We met her sister, Susana Veiga, and Veiga's husband, Javon Tyrone, at the Dusenberry Center.

As a sign of the bond they share, each member of the trio has an identical tattoo on their hand. "We call ourselves the triangle; the triangle decided, 'we need to move in together,"" Shack said.

That has been their life since August last year, caring for two parents who are each in their own stage of the disease.

"It's been eye opening. It has been a blessing in disguise," Shack said. "It has been so many things and so many emotions, but... I think we're very lucky and blessed that we have each other."

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Teresa Shack and her sister Susana Veiga show off matching tattoos they got, along with Veiga's husband Javon Tyrone, that symbolize their shared journey of taking care of their aging parents with dementia.

Khalsa, DCSA's program director, said other countries have already adopted the memory café model and have succeeded in helping people like Teresa and Lupe.

"They actually come from the United Kingdom; they're worldwide. There's memory cafés in Brazil, Australia..." Khalsa said. DCSA run a total of six cafés at different points during the month across Pima County. They have plans to add two more, but for now, Ron Manoogian likes to bring his partner, Tom Brady, to the welcoming environment inside the Dusenberry Center.

In sitting down to talk to the couple, we noticed Brady, who's receiving care for dementia, would have vivid flashes and remembering his career as a court administrator in Scottsdale.

In between the jokes and building puzzles, he'd also tell me how much life experience he has under his belt. "78? That's what I am. 78," Brady said.

However, at this point in Brady's life, Manoogian said it's gotten increasingly harder to communicate with him. He still feels a strong sense of love and duty to bring Brady to a supportive group.

"Tom will do things that he normally wouldn't do at home," Manoogian said. "He's around people that are caring, they're laughing. They have great pastries here... and Tom will sing..."

"I take care of Tom. He took care of me. As long as I'm able to, am alive, I will take care of him and I won't put him in a nursing home or a care home or anything."

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A look insied the 'memory cafe' at The Katie Dusenberry Healthy Aging Center, 600 S. Country Club Road.

Looking at the bigger picture, Khalsa said DCSA wants to be a resource anyone can call or write to for guidance.

They offer a one-hour course where families better understand what dementia is, medically speaking, what it looks like, and how to talk about it so it's not a taboo conversation when a loved one starts to change.

"Denial is a huge piece of it because nobody wants to admit that they're losing their memory," Khalsa said. "If we can have a community that understands what dementia is that isn't afraid of using that language, then it will help with denial and it will help the families accept a diagnosis and ideally it will help people recognize the signs and symptoms earlier so that they can get those diagnoses before it's late stage dementia."

DCSA staff are already working with both Pima County and small businesses to give neighbors more of those education tools. One of those tools is a free screening to check you or your loved one's cognition.

Here, you can watch my conversation with David Torrez, a DCSA/PCOA options counselor; we discuss the screening itself and how counselors then help people and families build a care plan:

DCSA WEB EXTRA, SCREENING TOOL FOR MEMORY LOSS FROM PCOA AND DCSA

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José Zozaya is an anchor and reporter for KGUN 9. Before arriving in southern Arizona, José worked in Omaha, Nebraska where he covered issues ranging from local, state and federal elections, to toxic chemical spills, and community programs impacting immigrant families. Share your story ideas and important issues with José by emailing jose.zozaya@kgun9.com or by connecting on Facebook, Instagram and Twitter.