Editor’s Note: This is the fourth of a five-part series looking at the effects of Alzheimer’s in Arizona. Read the first three parts here.
PHOENIX — In Arizona, dementia is the fourth-leading cause of death, according to The Arizona Alzheimer’s Task Force.
Among women 65 and older, it’s the No. 1 cause.
It’s not the disease that is responsible for their deaths, but more often the stress that caregivers endure when a loved one slides into a state of dementia.
Carla Gilliam is in the middle of what she is calling her “long goodbye” to her lifelong sweetheart, Gary.
“It’s broken my heart,” she said while holding his hand at the historic John Gardiner home in central Phoenix. “It’s one of the hardest things I’ve ever gone through in my life … physically and emotionally.”
The home was donated to the Hospice of the Valley for one-on-one palliative care to assist patients and their families facing the final stages of life.
“Hi, Gary!” she called out as she entered his room. “It’s Carla,” she reminded her 6-foot-2 husband as he laid in his hospital bed.
“It’s gorgeous outside,” she remarked looking out the arcadia window at the shaded paver-stone patio and fountain.
Gary did his best to answer with words, but it’s the smile on his face that showed he still recognizes the girl he grew to love 50 years ago.
“You sure are a cutey,” he told her as she leaned in for a kiss.
“He was not a man that did that when we were healthy and normal,” Carla said of the man who once commanded the kitchen in the same way he ran his dental business before they retired. “He referred to me as ‘Junior’ most of the time.”
“We retired on his 55th birthday,” Carla said.
Seven years into retirement he suffered a massive heart attack.
“Gary had open-heart surgery for a quadruple bypass,” and took his rehabilitation seriously over the following months, but “something was not right,” she noticed.
Carla would catch him reading the New York Times upside down and, a year after the surgery, Gary told her “he went the wrong way against three lanes of traffic.”
Fortunately, no one was hurt, but Gary’s pride wasn’t the same.
“He came home with a tear in his eye and said, ‘I’m going to give you the keys, but do you promise to take me wherever I want to go?'”
She promised and said she never left his side going forward.
Aside from his mental state, Gary appears as healthy as he did before his diagnosis. His skin is clear and resilient, his smile is bright and his eyes still twinkle when Carla walks into the room.
But as he laid prone on the bed in the home, they both know the prognosis.
“The doctors say he should be passing here in the next couple of days, possibly weeks,”Carla said while still holding his hand.
The couple have known for a decade this day was coming.
A neurologist at St. Joseph’s Hospital diagnosed Gary with dementia at age 63.
“It went fast,” Carla recalled, saying she never had the chance to catch up.
“Every day was a new day,” she said. “I never knew what I was going to wake up to.”
Her husband would “sundown,” a common symptom doctors describe as agitation that drives dementia patients to walk in the middle of the night.
“I only slept for one hour a night,” Carla said recalling the first six years trying to manage her towering husband, who was nearly three times her size. “So, I never had a break.”
In 2011, she found a nursing home.
“Three days later, I had a heart attack,” Carla said.
Specifically, she learned, “Broken Heart Syndrome, brought on by stress and sadness.”
The nursing home lifted a little bit of the burden, but Carla kept noticing Gary was chronically dehydrated, “so in a way, I was still on duty, but just not at home.”
Those first three years, she admits, “I didn’t want to live.”
Then, she said her prayers were answered.
“I knew that Hospice of the Valley was going to be part of the end of our journey.”
Carla had trusted HOV’s palliative care a decade earlier when her mother was dying of cancer.
“But, getting to come to Gardiner House,” she marveled as she surveyed the homey atmosphere. “I can be here 24/7 and crawl into bed to hug him and hold his hand.”
It’s allowed the couple to come full circle in these final days.
“The day that I get the phone call that he has gone somewhere else…” she smiled peacefully at Gary as he interrupted, “In a while!”
She leaned in and kissed him again, saying “I love you,” then, finished her thought.
“I have no regrets.”
If you suspect you or a loved-one may have Alzheimer’s or a related dementia, contact any of the following agencies for help in Arizona: