People don’t expect loved ones to yell, cuss, bite, steal or engage in other bad behaviors, but when dementia strikes, the unimaginable becomes reality.

Dementia is a rising cause of death among older people, and more cases are being diagnosed than ever. By 2050 the number of people with dementia is expected to triple.

Memory diseases progress uniquely. People may start noticing a change with memory loss that impacts their daily life. Over time, people’s behavior changes and it’s difficult for them to care for themselves without help.

For caregivers of people with dementia,  “it’s a 24/7, stressful job. You have to take care of yourself because if you don’t, they won’t have you,” said Marilyn Foster.

A stroke preceded Foster’s mother’s dementia. Foster cared for her mother until her death, and she has turned her experience into a way to help others.

She leads the Alzheimer’s Support Group for Caregivers meetings, held at 1 p.m. on the first Tuesday of each month at St. John’s Lutheran Church, 950 S. State Highway 47, in Warrenton. She’s been doing it for a decade.

For information about the support group, call Foster at 636-456-4195.

Foster said people experience dementia differently. So, too, do their families.

Brook Akowicz agrees with that sentiment. She is the community relations manager at Oak Pointe, an assisted living and memory care center, 700 Forrest Ave. in Warrenton.

“Not even one dementia case is the same and each stage presents different symptoms, behaviors and challenges,” Akowicz said.

The Alzheimer’s Association is the leader in the care, support and research for dementia and Alzheimers disease. The group recognizes 10 types of dementia.

One of them, and the most common, is Alzheimer’s disease. The organization reports that somewhere between 60 and 80 percent of dementia cases are considered Alzheimer’s disease.

Family and close friends often become caregivers, which can lead to its own set of health problems.

Akowicz said, “Caregiver stress is real.”

Warrenton residents Carol McBride took care of her mother, Mary Pensinger, when she got sick. Pensinger fell and when she woke up after hip surgery life changed.

“She was friendly. Very active. She was 80 years old and shooting baskets with my grandson before the fall,” McBride said. “When she came out of the anesthesia, she was a different person. She was swearing like a sailor. That wasn’t her.”

Pensinger acted bizarre, and she didn’t recognize her daughter. She didn’t know who she was or where she was.

McBride said she was told her mother had undiagnosed dementia and the anesthesia accelerated the symptoms.

There is no be-all defining test for dementia. It is diagnosed with a medical assessment that may include a physical exam, mental status tests, neurological exam and brain imaging. What is true, is that most forms are incurable and only get worse.

McBride dedicated her life to the care of her mother for the next eight years. She did everything for her. While Pensinger was capable of walking, she used a wheelchair. While she was capable of bathing herself, McBride bathed her.

“It wasn’t that she couldn’t, it was because she couldn’t remember how,” McBride explained.

When her mother started wandering off, she started locking down doors and windows, making it difficult for people to get in or out of the house.

McBride’s social life suffered during those years.

“After a while, friends quit calling,” she said, adding, without a doubt, “If I’d had a husband, he would have left me.”

As Pensinger’s disease progressed, the role of caregiver came with more challenges. Pensinger had no sense of time or sleeping patterns. She would wake up at night thinking it was time to do daytime activities.

McBride woke up too. They both were sleep deprived. Things were not the same.

“My mother could be combative at times. She would accuse people of stealing. She would say awful things,” McBride said.

Akowicz said stealing and paranoia are common with dementia.

McBride said she never considered finding a care center for her mother.

“I couldn’t put her in a nursing home,” she said. “I just couldn’t do that to her. She was all I had.”

She remembered that her mother, when she was well, had always talked about not wanting to live in a care center. Later on, Pensinger spent some time in an inpatient rehabilitation center. It didn’t go well.

“I brought her home and she was so much better off,” said McBride, adding the hardest part was seeing her mother turn into someone else.

She said her mom would tell her, “I don’t know you, but I don’t know what I’d do without you.”

Pensinger passed away in July. She was 89. McBride’s only regret is that Alzheimer’s disease stole the time she could have had with her mother.

McBride said after being with her constantly for years, being without her mom was a strange feeling.

“The first month was so weird just opening the door,” she said. “Everything changed. I didn’t realize how lonely I was until I got out to meet people.”

Cheri Hofeldt’s mother, Arcie Pointer, had a stroke in 2007 and was diagnosed with dementia shortly after. She kept it a secret for about two years while living out of state.

In 2010, she decided it was time to move to Warrenton to be closer to her daughter. She moved into Oak Pointe because she wanted an independent life.

“She thrived for over six years. I always felt she loved it there,” Hofeldt said.

The later years were more challenging.

“She was not the mom I grew up with,” Hofeldt said.

Pointer didn’t understand and couldn’t control her own behavior. She avoided her medicines, sometimes got angry and hurt people’s feelings.

“People with Alzheimer’s become very frustrated because they’ll have a lucid moment and they can’t do what they used to do,” Hofeldt said. “They have a bit more paranoia because they think someone’s going to hurt them or take something away from them.”

Pointer died in November of 2016. She was 91.

Hofeldt said people don’t really die from Alzheimer’s disease. Rather, they die from a complication of the disease.

“Mom basically forgot how to swallow,” she said.

By then the family had discussed end of life plans and made legal arrangements. Her mom made it clear she did not want to be kept alive by tubes.

Hofeldt had power of attorney.

“I know I was doing the right thing for her, but there were moments I felt like I signed her death certificate,” she said.

Akowicz said watching a loved one change into someone else makes dementia one of the hardest illnesses families can experience.

“It’s sad to think about (a loved one) reverting back to an infant almost,” she said. “They will be completely dependent on someone else to take care of them. The will forget to do everything, even as simple as breathing.”

McBride and Hofeldt chose care that was right for them and their families, which is what people need to do.

Akowicz said families need to do what is best for them and what they can handle physically, financially and emotionally. Some may do it alone, some will hire in-home care and others will select memory care centers like Oak Pointe.

The benefit of centers, she said, is that they are designed, operated and staffed to take care of people with dementia.

“Educate yourself to know what it is you’re going to face, the behaviors you may see. Know when is too much for you. It’s OK to ask for help,” Akowicz said.

Dementia is a growing health problem. While heart disease is still the No. 1 cause of death in the United States, fewer people are being diagnosed. In contrast, the number of dementia cases is going up.

Health care professionals and researchers are taking notice. More information and services are available, and there is more to come.  

Microsoft founder Bill Gates recently invested $50 million of his personal wealth to the Dementia Discovery Fund. The Dementia Discovery Fund is a global funding initiative created to support advanced research for brain diseases. 

 Alzheimer’s by The Numbers

• Since 2000 deaths from heart disease have decreased by 14 percent while deaths from Alzheimer’s disease have increased by 89 percent.

• One in 10 people age 65 and older has Alzheimer’s dementia.

• Almost two-thirds of Americans with Alzheimer’s are women.

• 41 percent of caregivers have a household income of $50,000 or less.

• More than 5 million Americans have Alzheimer’s. By 2050 it could increase to 16 million.

Brook Akowicz, left, community relations manager at Oak Pointe in Warrenton, helps residents in the memory care section during lunch. Oak Pointe, 700 Forest Ave., provides assisted living and memory care. Record photo/ Kate Miller.

Carol McBride couldn't imagine anyone else caring for her mother after she was diagnosed with dementia. Here, she kisses her mom Mary Pensinger. McBride cared for Pensinger throughout her battle with dementia. Submitted photo.