Caring for loved one with Alzheimer’s disease weighs heavy on caregivers
This is the fourth of a five-part, weeklong series studying how Alzheimer’s disease can affect you, no matter your age. Read the other parts here.
PHOENIX — While more than five million Americans in the U.S. are living with Alzheimer’s, another 15 million are, quite literally, sacrificing their own lives to care for those who suffer.
When Barbara Yavitt answered the door at her patio home in Scottsdale, she made the introduction quick.
“Hello! Welcome,” she said, as the 82-year old turned back swiftly to keep her eyes on the middle of her living room where her 86-year-old husband, Richard, sat in a recliner.
The couple moved to the Valley when she was battling her second round of cancer.
“In 1990, I had brain cancer,” she said. “Six months later, I had colon cancer.”
At the time, Richard appeared healthy and bicycled every morning with friends before heading into his office as a certified public accountant.
At 6-foot-2 and 210 pounds, he was healthier than Barbara.
“Richard was stronger than me,” she said.
In their lifetime, they raised three children.
“Our son lives in Chicago with his wife and our twin daughters live here in Scottsdale,” she said.
Barbara’s best friend, Ruth Klein, moved out to the Valley to be closer to her.
“She is the most honest, caring, humane human being I’ve ever met,” Klein said.
Between her best friend and Richard, Barbara was in good hands.
“He took very good care of me during all of those times,” she smiled while looking fondly at Richard, who was resting.
A decade ago, while consumed with her battles against cancer, Barbara admitted she didn’t have a clue Richard’s health was failing.
It wasn’t until his doctor called her at home and said, “you need to come with him all of the time,” that she realized there was a problem.
“He doesn’t know how old he is now,” she recalled the doctor saying.
The accountant, who prided himself on knowing numbers, time and space, was struggling with mid-stage Alzheimer’s disease.
As Barbara retold the story, Richard began to hyperventilate in his recliner.
“Richard, wait,” she told him firmly. “I will get you down.”
In just a few short years, Barbara has gone from being cared for to caretaker.
Her best friend jumped up to lend a hand to help lift Richard safely out of his chair.
“It’s really very difficult to watch because when he talks to her, he doesn’t make any sense,” Klein said.
But she knows Barbara is committed to keep Richard out of a nursing home
“She he wants to be there to comfort him,” Klein explained.
Trying to make it to the restroom, Richard is a full half-foot taller as he leans on Barbara’s 5-foot-2 frame.
To watch him walk, he waddles like a toddler, but Barbara quickly corrects that notion.
“It’s not like being a child,” she explained, adding that it’s more sinister.
“It’s things falling apart inside, he can’t balance, he can’t tell me when something hurts,” she said as a beam of sunlight outside irritated his eyes.
“And, sometimes, he can be mean.”
Banner Alzheimer’s Institute psychiatrist Dr. Anna Burke said a lot of her dementia patients are quick to irritate.
“Many Alzheimer’s patients experience a loss of a filter, so whatever they feel they will act upon,” she said. “If they get angry with you, they may lash out.”
It’s not often, but enough to put Barbara on constant vigilance.
“One night he was above me with a fist,” she said ,describing an early moment with Richard soon after his diagnosis.
She had to restrain the man twice her size.
“I had bruises because I have to keep him safe,” she said.
If it’s not the abusive behavior worrying caregivers, it is the mercilessly long goodbye that takes it toll.
“We’ve been married 61 years and he doesn’t always know me, but, he’s used to having me around,” Barbara said with a sad acceptance. “And, he doesn’t know the children.”
Each of the changes, both big and small, wear on the caregivers’ own health, Burke warned.
“Under a great deal of stress, it can lead to other disorders, strokes, even sleep deprivation,” she said.
Research showed only a small percentage of caregivers are compelled or find the time to seek proper help for themselves, which may explain why studies also show 60 percent of the caregivers die before their loved one passes from Alzheimer’s disease.
Perhaps more lives could be saved if caregivers knew Medicare provides free comprehensive help to the patient and their loved one during the last 12 months of late-stage Alzheimer’s.
“There comes a point where the person is entering end of life and that’s when hospice services are provided,” Dr. Maribeth Gallagher with Hospice of the Valley said.
When it comes to Alzheimer’s, she said, most established hospice programs have one main goal in mind — comfort.
Imagine, Gallagher said, a team of professionals forming a community around the patient and the caregiver and asking, “what is the most important thing for this person?”
Not everyone’s needs are the same, but with hospice, Gallagher said, “everybody works together as a team and we benefit from the richness that a chaplain might bring, or a social worker, a physician or a nurse.”
In Barbara and Richard’s case, hospice helps with costly prescriptions and delivers them to the Yavitts’ home.
A nurse comes to him, allowing the couple to get vitals checked without the grueling task of preparing Richard to head to a doctor’s appointment.
In the morning, when it is time to get Richard cleaned up and ready to go, hospice sends a social worker to help with the heavier lifting and transporting.
“I have this very strong young man come in to help,” Barbara’s face lights up because the man helps lighten the load, and when things get particularly awkward, he lightens the mood.
“Richard will want to kiss his hand,” she laughed, adding the caregiver will quip back at him with a chuckle, “Not naked! Not until you’re dressed!”
It’s those lighter moments she now experiences, with the help of hospice, that help her focus better on her own health and enjoy those short, but precious moments.
“We had a wonderful life,” she reflected. “Now, it’s just time for me to remember the good times.”
To learn more about Alzheimer’s disease and research being done here and around the world, visit the following resources:
KTAR’s Kathy Cline contributed to this story.