‘Good to know your enemy’ — Alzheimer’s caregiver urges others to seek education, support

Gilbert3.jpg

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.

Gilbert1.jpg

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.

Gilbert2.jpg

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.”

Health officials predict ‘tsunami’ of new dementia cases

The number of Americans living with dementia will double to nearly 13 million over the next 20 years, according to a recently released report from the Milken Institute.

The “Reducing the Cost and Risk of Dementia: Recommendations to Improve Brain Health and Decrease Disparities” report estimates the number of Americans suffering dementia will double by 2040.

Women are expected to bear a disproportionate burden in that increase, increasing to 8.5 million, compared to 4.5 million men.

Economic costs associated with dementia are predicted in the report to exceed $2 trillion over the next 20 years, with women shouldering more than 80% of the cumulative costs.

“Longer lifespans are perhaps one of the greatest success stories of our modern public health system,” said Nora Super, lead author of the report and senior director of the Milken Institute Center for the Future of Aging. “But along with this success comes one of our greatest challenges. Our risk of developing dementia doubles every five years after we turn 65; by age 85, nearly one in three of us will have the disease.”

Nicolette Casula, community outreach coordinator for Alzheimer’s Association Oklahoma Chapter, said the health care system in Oklahoma is “in no way ready” for that kind of increase in the number of dementia patients.

“That is across the board, in Oklahoma and nationwide,” Casula said. “We all need to prepare. It’s not just health care systems. This is something that affects all of us. More people are diagnosed every day.”

Alzheimer’s Association works to educate the public and health care providers about dementia and its care — there currently is no cure. Casula said that effort remains hindered by public stigma surrounding the disease.

“There is a general shortage of understanding,” Casula said, “and there is a bit of stigma surrounding even having that conversation.”

About 100 people turn 65 in Oklahoma each day, according to Alzheimer’s Association figures.

Erin Powell, family outreach coordinator with Alzheimer’s Association Oklahoma, said many of those Oklahomans and their families remain uneducated about and unprepared for dementia, in part because overtaxed health care systems don’t provide one-on-one counseling about the disease.

“Even when there’s a diagnosis, physicians just don’t have the time to sit with them and describe the next steps and what’s going to happen,” Powell said. “Unfortunately, a lot of times they end up doling out what is currently a death sentence, and don’t have time to connect the families with help.”

Powell said the Alzheimer’s Association works to fill that gap, and connect families with support and services.

Those services will continue to be stretched thin, Powell said, as more “Baby Boomers” age into the high-risk age for dementia.

Powell agreed with the Milken report numbers, and said long-term care availability, health care costs and physical burdens on caregivers will become increasingly problematic in the foreseeable future.

“We have a compounding problem here, because dementia affects so many people, and because of how much care they need,” Powell said.

The greatest need, she said, is to provide better education and support to unpaid caregivers — usually family members of the person diagnosed with dementia.

Mark Fried, president and CEO Alzheimer’s Association Oklahoma Chapter, said resources in the state may be overwhelmed by 2025, as the number of Oklahomans with Alzheimer’s and other dementias increases from 65,000, currently, to a predicted 74,000 in five years.

“We know things are tight and stressed right now, with the number we have at this time,” Fried said. “As more of the Baby Boomers get older, with age being the number one risk, we understand the tsunami we’re facing, and that’s going to pick up speed in the next couple of decades.”

Fried said health care officials and legislators are aware of that impending “tsunami.” But, he said, “it’s escalating so quickly … it does make it difficult to come up with something that’s going to be 100% effective.”

The Legislature formed a task force 10 years ago to focus on Alzheimer’s disease in the state, and Fried said legislators are doing a good job of working toward enacting that group’s 23 recommendations, which focus on caregiver education, public awareness, and improving care standards for health care providers and adult protective services.

Another work group was formed in about 2015, Fried said, and that group is continuing “study and conversation.”

“There’s been some encouraging movement on those recommendations in the new levels of dementia-specific training for people in dementia care,” Fried said. He pointed specifically to Senate Bill 435, passed in the last session, which increases training standards for adult protective services workers.

“The state Legislature has been proactive the last couple of sessions to address these issues and make sure aging issues are on the forefront,” Fried said.

Dealing with the increase in the number of dementia patients will be a complex issue, Fried said, involving health care costs, long term care availability and funding, and an increasingly aging population. But, ultimately, Fried said, addressing all of those issues needs to start with both physicians and the general public spending more time on dementia education.

“If dementia education becomes a priority within the health care systems across the state, you’re talking about a better quality of care for people with dementia, wherever they happen to be,” Fried said.

Nora Super, lead author of the Milken report, also advised the general public to take some basic steps toward reducing their dementia risk.

“Emerging evidence shows that despite family history and personal genetics, lifestyle changes such as diet, exercise and better sleep can improve health at all ages,” Super said.

To view the full Milken report, visit https://milkeninstitute.org. For more information on Alzheimer’s and dementia, visit https://www.alz.org, or call their 24-hour help line at (800) 272-3900.

One thought on “‘Good to know your enemy’ — Alzheimer’s caregiver urges others to seek education, support

  1. 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.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s