When ‘Pops’ gets upset: An Alzheimer’s Story Part II

Pops walked into the central office of his family’s business on the South Side. Standing there, staring ahead, he looked lost, perhaps confused, and his brows were crunched with concern. “What’s wrong with you,” his wife of 48 years and business partner asked. “Jack, are you okay; do you need something?” The petite woman was not prepared for what came next.

Her tall and muscular husband rushed toward her, pointed a finger in her face and demanded to know who she was and what she had done with his mother, who had been dead for over 20 years. “Where’s my mama,” her husband bellowed, towering over her 5-foot, 3-inch frame. “Who the hell are you, lady and what are you doing in my house?” Just as quickly as he bolted toward her, Pops came to his senses, relaxed, and took a seat on a nearby office chair. Seconds later, he smiled at Jill and asked her what they were having for lunch. He acted as if nothing, just minutes before, had even happened.

“Jill” agreed to talk to this reporter under the condition that her family’s identity would be protected. The Crusader changed their names and the name of their business according to that wish. 

According to Jill Freeman, “Jack,” 78, was diagnosed with early-stage dementia in 2010 and within twelve years, it had advanced into dementia life-changing levels. Before his health decline, he was a vibrant, active business owner who exercised regularly and took pride in the fact that, unlike his buddies, he had kept his weight and physical fitness. The couple met in the late 1960s and were united in matrimony in 1976 by a well-known minister at a festive wedding held in their home. Though they had no children together, the Freeman’s blended family consisted of seven children. 

Despite his diagnosis, Jack, who is affectionately called “Pops” by relatives and community members, insists nothing is wrong with him. He tells family and friends that his memory loss is just a sign of ‘just getting old.’

“There are days when Jack doesn’t know who I am, and quite frankly, I don’t know who he is either,” Jill told the Crusader. “Pops is a big guy. Look at me, I get scared out of my mind. Sometimes, I call our (adult) son or daughter over to be there when he has these fits. I don’t know if he’s going to hit me or try to storm off or anything. (His behavior) causes arguments. Our children are worried he’s going to hurt me. It’s really frightening.”

Mrs. Freeman said that in addition to her husband’s change in temperament, he is no longer able to do meaningful tasks associated with their business, including running errands. “When I would step in and say Pops let someone else handle that, he’d become angry and (would) start going off,” Mrs. Freeman explained. “I used to let him drive and take care of things, like our banking or picking up supplies. He has gotten lost. He will leave and then call me 10 minutes later and ask me where he was supposed to be going.”

To cope, Mrs. Freeman relies on a network of family, friends, and even employees to aid her with her husband. “If I’m in a business meeting, an employee will offer to keep (Jack) occupied until I can get back to him,” she said. “In the evenings, I rely on my daughter to help me out. It takes a toll on her too—she feels like she’s losing a father.”

Alzheimer’s disease is a form of dementia that manifests through a range of cognitive, behavioral, and psychological symptoms that progressively worsen over time. Older Black Americans are about twice as likely to develop Alzheimer’s or other dementias compared to older white Americans, highlighting the need for culturally tailored approaches to diagnosis and care. 

Alzheimer’s accounts for 60 percent to 80 percent of dementia cases. Vascular dementia, following a stroke, is the second most common type, according to the Centers for Disease Control (CDC). Another well-known form of dementia is Parkinson’s disease.

Dementia is an umbrella term for 77 types of brain disorders that cause a gradual and often irreversible decline in cognitive functions. One of those disorders is Alzheimer’s disease. It affects memory, reasoning, planning, and communication, ultimately affecting an individual’s ability to perform everyday activities. In addition, people may experience changes in behavioral patterns, such as paranoia or expressed fear of family and friends, and may show depression, hostility, physical aggression, and rage.

Nearly 7 million Americans are living with Alzheimer’s disease – a leading cause of death in the United States. Blacks are two times more likely to develop Alzheimer’s. Though the disorder is associated with older adults, it can affect people younger than 65, including those who have had a traumatic brain injury. In Illinois, there are more than 240,000 people living with the disease and 314,000 caregivers, according to the Alzheimer’s Association – Illinois Chapter (AAIC).

The organization offers a 24/7 Helpline (800-272-3900), and support is available year-round free of charge, according to AAIC spokesperson Lionel Martin. Specialists and professional clinicians offer confidential support and information to people living with dementia, as well as caregivers, families, and the public. One such program is their “Empowered Caregivers” educational program that provides counseling, support groups, and resources to families, churches, and community groups.

Phillip Bennet, a program manager and faith-based coordinator, has been working for AAIC for 11 years this December. He encourages caregivers to reach out through his organization’s hotline for when they experience aggression or feel they can’t handle someone. “We don’t care if they call at 3 p.m. or  3 a.m.,” he said. “A central part of what we do focuses on both getting effective treatment and care for patients and ensuring they have strong, well-resourced support systems. 

“I have seen many cases where the caregiver’s stress and health declines while dealing with this,” he said. “I’ve even seen primary caregivers die before their family member does. There are a lot of new responsibilities involved in dealing with people suffering from dementia, and it can induce stress on the household.

Bennett added that many people try to “do it all by themselves” and need to learn how to communicate their need for support and delegate. “There are adult day cares, short-term and long-term residential facilities that people may want to consider,” he explained. “Many people express a feeling of betrayal by placing a loved one in a program or residential program, or they think they are the only ones who can do it best. But the focus is to ensure that a person has the support they need—otherwise, a caregiver might be accused of elder abuse. 

“The other option is to have the family member move in with another relative who might be able to provide more support, especially if the primary caregiver is also of age or can’t physically deal with their person,” Bennett said. “It’s not just about someone being aggressive or wandering off, what if they fall? If they are bigger or heavier than you, can you pick them up?”

AAIC also offers families counseling on arranging end-of-life plans, family trusts, and wills. “When the family’s provider has Alzheimer’s, it can throw the entire household into both emotional and financial chaos,” Bennett said. “We have people on hand who can assist caregivers with making difficult or complex arrangements so they can be prepared during this health journey or have a plan if the person is in transition.”

Jack and Jill Freeman have made such plans. Pops recently began attending an Adult Day Care program during their day, which happens to be the busiest time for their family-owned business. “I didn’t want Jack to think I was throwing him away,” Jill Freeman told the Crusader. “But putting him in adult care was one of the best decisions I’ve made. He is only there to three or four o’clock in the afternoon, but that gives me time to get work done or take care of myself for a while. He seems to like it on most days. 

“They have activities, fitness classes and healthy lunches for them,” she said. “I don’t want to put him in a nursing home. I love my husband, and we took a vow (of) ‘til death do us part.’ But it is getting harder to handle him, especially when he’s acting out. I have to stay up until he’s fully asleep for fear of him leaving the house. That also means I have to sleep light or sometimes not much at all.”

Editor’s Note: Some names have been changed to protect the medical privacy of the individuals involved.