Slow Dance: Embracing Alzheimer’s Caregivers

Slow Dance: Embracing Alzheimer’s Caregivers

Your Impact

Tina Rodrigues, 49, met her husband Kevin, 54 at a country-western concert. He invited her to dance.

“There was a chemistry between us instantly,” Tina recalled. “Probably the best we’ve ever danced was on that one night.”

Through 26 years of marriage, they built an adventurous and loving family. Tina raised three boys while Kevin worked in sales for an industrial window and flooring company. Kevin, an avid mountain biker and outdoors enthusiast, was the light wherever he went.

“Dad’s charismatic personality made everyone feel comfortable,” said Jacob, age 19, their youngest son, “which is why my mom fell in love with him.”

Things changed in 2012 when Tina noticed her husband was forgetting his keys, wallet, and even items at the grocery store. Kevin could calculate the square footage of a building just by looking. He wouldn’t ‘just forget!’

Two years passed: Kevin continued missing more and more things and eventually lost his job. A visit to their family doctor did not provide any answers. Tina had a hunch it could be Alzheimer’s, based on her work at the Alzheimer’s Association.

At a subsequent visit to a neurologist, Kevin struggled taking the mini-mental test. The neurologist prescribed a medication used to help with Alzheimer’s symptoms, then sent Tina on her way without any guidance.

“We were left on our own with no support,” said Tina, her voice breaking with tears. “I didn’t tell Kevin then because I didn’t want to be the person that had to share that information with him, so I kept it to myself. I thought it would be better once we got in front of a doctor who would talk to us both.”

Kevin and Tina’s experience, unfortunately, is very common. Anna Burke, MD, Director of the Alzheimer’s and Memory Disorders Division at Barrow Neurological Institute refers to this all-too-common process as “diagnose and adios.” Front-line doctors rarely have the resources or expertise to treat patients with memory disorders appropriately, and patients facing an incurable disease are abandoned to their own devices.

Overwhelmed and uncertain of her next steps, Tina found her way to Barrow where the experts in the Alzheimer’s and Memory Disorders Division gave Kevin a battery of tests to confirm an Alzheimer’s diagnosis. Then they provided Tina with a wraparound support system.

“They gave us absolute support from the moment of the first appointment,” Tina shared.

Kevin was very young for an Alzheimer’s diagnosis, but Tina knew she wasn’t alone. She relied on Barrow’s social worker, Rose Urbano-Spencer, to connect them with resources and ensure legal and financial paperwork was in place. She talked with Kevin’s nurse practitioner, Marisa Peoples, about scheduling follow-up visits and navigating the disease progression.

“I can’t imagine going through this without Barrow,” Tina said. “I couldn’t do this alone.”

She and Jacob have learned to cope with Kevin’s changes. Today, he is unable to drive, work or play video games with his sons. He struggles with finding his words, buttoning his shirt and zipping his zippers. Sometimes Kevin doesn’t know how to return a hug when his youngest son reaches for him. He sheds tears of frustration when he can’t find words to fully express his thoughts.

Although the roles in their marriage have evolved, their love remains the same. Barrow’s innovative programs have helped Tina cope with becoming a caregiver. On good days, she and Kevin dance in their kitchen to Garth Brooks’ songs.

“The system is lacking supports to care for these patients,” said Dr. Burke, the Karsten Solheim Chair for Dementia. “We realize we have to go beyond our own walls.”

Barrow’s world-class experts are pushing the boundaries of Alzheimer’s care to provide state-of-the-art treatment for patients and comprehensive, 360-degree support for their caregivers. This includes support with legal and financial planning as well as support groups for patients and families.  This type of care is not covered by insurance, and through your support, Barrow seeks to expand these programs for more families like the Rodrigues.

 

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