Sheila Gilbert holds a photo of herself and husband, David, taken in 2014, shortly before he was diagnosed with dementia.
ENID, Okla. — This Thanksgiving, Sheila Gilbert, of Enid, will be making a drive few would want to make.
She’ll be driving almost three hours to the Claremore Veterans Center, where her husband, David, is one of 5.7 million Americans living with dementia — a number expected to double over the next two decades.
The couple met in their senior year in high school in Lindsay, between Pauls Valley and Chickasha, in Garvin County.
With the war in Vietnam raging, David elected to enlist in the Marine Corps after graduation.
“Vietnam was hot and heavy, and he was a poor kid and he knew he was going to be drafted,” Sheila said.
He enlisted in August, and the couple were married in December 1967.
David served nine years as an enlisted Marine in aircraft squadrons, became a warrant officer and finally retired as a captain in 1990.
Sheila Gilbert and husband, David Gilbert, then a captain in the U.S. Marine Corps, appear at a high school reunion in 1987. David now is a dementia patient living at the Veterans Administration facility in Claremore, Okla.
After he retired from the Marines, the couple followed Sheila’s career in the Defense Commissary Agency, to commissaries in California, Texas and New Mexico, until she was assigned as the commissary officer at Vance Air Force Base in 2002.
Along the way, they raised two sons and rescued many stray cats and injured animals.
“We both love animals, and we’ve rescued many a cat,” Sheila said with a laugh. “It was supposedly to find them good homes, and they always did — at our house.”
In his retirement in Enid, Sheila said David loved to walk in Oakwood Mall, built bird and squirrel feeders, and usually had a home improvement project in progress. The couple also enjoyed time together attending Willow View United Methodist Church, supporting Toys for Tots and sitting in the backyard, watching the birds and squirrels.
Their idyllic retirement began to change in 2014, when Sheila noticed unsettling changes in her husband. The quiet man who loved caring for animals and walking in the mall began to lose his temper and become angry without reason, Sheila said.
“I thought he had a brain tumor, the way he was acting,” Sheila said. “He was just a little bit off. Things just weren’t quite right.”
A visit to the doctor led to an MRI, and the diagnosis that changed both their lives.
“The doctor said, ‘Your husband has Alzheimer’s, and unfortunately it’s only going to get worse,'” Sheila said.
Initially, she downplayed the severity of the diagnosis.
“At that time the only thing I knew about Alzheimer’s was he might get lost or lose his keys,” Sheila said. “I just thought, ‘OK, we’ll deal with this.'”
She said she soon found out how taxing it is to care, full-time, for a loved one with dementia.
“When you are a caregiver, and you have them at home, it’s 24 hours a day, seven days a week,” she said. “You never get to relax, you never get to really sleep. It’s like you’re always sleeping with one eye open.
Sheila Gilbert, a retired commissary officer last posted at Vance Air Force Base, discusses the challenges of being a caregiver to a loved one with dementia, during an interview with the Enid News & Eagle, Saturday, Nov. 23, 2019.
“You’re lost. You’re in shock. You’re just spinning,” she said. “There’s so much you have to do. I think people who haven’t walked in our shoes don’t understand it. It’s just too much. It’s overwhelming.”
That challenge became significantly worse about two years after David’s diagnosis, when the effects of his dementia turned from anger to violence.
“Every night, he would wake me up, punching me, pulling my hair and accusing me of everything,” Sheila said. “It wasn’t David. For 50 years, that man never touched me. It’s the disease.”
At the time, Sheila said none of her doctors told her the connection between her husband’s dementia and his violent outbursts.
“I just knew something was wrong, but I didn’t know what it was,” she said.
She tried to get David into mental health treatment. But, he refused, and without his consent, she couldn’t get him the help he needed.
Conditions continued to worsen until a friend from work, worried about Sheila, called her at home in June 2018. When David refused the call, she kept calling back. Finally, the friend called police to perform a welfare check on Sheila.
When the police arrived, there was no longer any hiding the effects of his dementia. Sheila had welts on her face, throat and chest from David’s blows. David was arrested and sent to the Garfield County Jail.
He remained there, in jail, for six months, while Sheila tried to find a nursing home that would accept him, which was a condition for his release.
David was rejected by every area nursing home, Sheila said, because of his record of physical violence. She turned to the Veterans Administration and was rejected four times.
“He was going to stay there, in jail, until I could find a place to take him,” Sheila said, “and I couldn’t find any place to take him.” In the meantime, Sheila said her already-trim husband lost 30 pounds in jail.
On the advice of a friend, she finally called the office of Congressman Frank Lucas. Enlisting the help of a congressman proved to make the difference.
“They went to work, and within three or four days they had him in the Claremore veterans’ home,” Sheila said.
Sheila said she’s grateful for the help, and for the staff at the veterans’ center. But getting him into a home wasn’t the end of the struggles.
Even with his veteran’s benefits, David’s care at the VA center still costs Sheila $4,000 per month, out of pocket. And the visits, when Sheila can make the drive to Claremore, are painful.
“He still knows who I am when I visit him,” Sheila said. “But, every other sentence is ‘I want to come home.’ I know he can’t ever come home, but he doesn’t. The visits are hard, especially leaving him there.”
It’s hard, Sheila said, to see her husband in the present, but know he’s not really there with her.
“His brain is just dying off,” she said. “Right now, David thinks he’s active duty still, and he retired in 1990.”
Even with the help from the VA, Sheila said she was still lost emotionally, and continually second-guessed her decision to have David admitted to residential treatment.
Things began to improve, she said, when she finally worked up the courage to call the Alzheimer’s Association and ask for help.
“I think the first time I called, it was just, ‘I need help and I don’t know what I need,’ and they were able to work with me,” Sheila said. “They are wonderful people, and they have a wealth of information out there, free of charge.”
She also got connected with one-on-one counseling, a monthly class on Alzheimer’s caregiving and a support group that meets monthly at The Commons.
Sheila said the education and support she’s now receiving are invaluable, and have given her a new understanding, even after five years of caregiving, of dementia and its effects.
Her only regret, she says, is she didn’t get connected earlier to that support and education.
“If only the doctor, when he said ‘Your husband has Alzheimer’s,’ had handed me a pamphlet or said ‘Contact the Alzheimer’s Association,’ this could have all been dramatically different,” she said.
That need may seem far-off for most of the population. But, Sheila urged others to get educated early about dementia, and the resources of the Alzheimer’s Association. Because, she said, “If you have a brain, you have a chance of getting Alzheimer’s.”
James R. Neal 
The diagnosis of any life-changing, catastrophic disease can be difficult to absorb at that moment, so even if doctors discuss available supports at the time of diagnosis, the message might not get through. A follow-up visit within a few weeks–when the shock has passed–would be so helpful for so many. I wish this practice was taught in medical schools.
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