Gail Howard knew something was wrong with her husband, Jackie, when he stopped driving. He had been diagnosed with Alzheimer’s after he retired, when he stopped working nights and began spending more time around his family, but Gail hadn’t know how it was advancing until he refused to get behind the wheel of a car. Now, he hasn’t driven in six years.

“I found out later that he almost had a wreck with our grandson in the car,” she said.

Gail has been Jackie’s primary caregiver for the better part of a decade. When Gail, a former certified nursing assistant, began noticing Jackie’s symptoms, she enrolled him in a study that ultimately led to his diagnosis.

“He didn’t talk about it a lot,” Gail said. “He still doesn’t talk about it a lot. He, whenever something would happen, he would forget something or he would do something that he would question, he knew it wasn’t right. I would let him know it was the disease, and he would get real quiet.”

In 2017, Alzheimer’s was the fourth leading cause of death in Alamance County, according to last year’s State of the County Health Report. It ranked fifth from 2013 to 2016 and seventh in 2012. Nationally, it’s the sixth leading cause of death, according to the Alzheimer’s Association.

Gail said being a nursing assistant has been invaluable in helping her learn how to take care of her husband. She knows that many others caring for loved ones haven’t had the same training and struggle to physically care for their loved ones.

“It’s helped me to realize that the things that he’s going through, that it’s the disease, it’s not him,” Gail said. “It helped me to be able to be more patient with him.

“Probably the hardest thing is being there day in and day out, watching them have to go through what they go through.”

Katherine Lambert, CEO of the Alzheimer’s Association’s Western Carolina Chapter, said her organization provides a variety of resources for caregivers and those recently diagnosed with Alzheimer’s or other forms of dementia, in addition to helping fund research.

“At the end of the day, that’s our vision, is a world without Alzheimer’s, and we know that the way to that is through research,” Lambert said. “But until we have some of those solutions, the other part of our mission is really around supporting the individuals living with the disease and their family members who are caregiving for them.”

The association offers a 24-hour, 7-days-a-week helpline, online information, educational programs, and support groups. Last year in Alamance County, the association worked with 430 individuals through one of these methods and 2,500 individuals overall in the greater Triad area, according to Lambert.

Gail has thought about joining a support group, but has never gone to a meeting because they’re at night. Their aide comes only three times a week for two hours to help out, and she doesn’t want to ask her children and grandchildren to stay with Jackie because they work during the day.

 

Hidden stress

LaTonja Fant is a support group facilitator at New Light Missionary Baptist Church in Greensboro. She knows firsthand the hardships that come with caring for a family member. Her grandfather’s Alzheimer’s symptoms began in 1995, she said. After her grandmother died in 2014, Fant looked after her grandfather for six and a half weeks.

“I didn’t see the stress,” Fant said. “My family recognized it, and I often say it’s good when you have family and friends around that can see the exterior appearance because internally, you may not see that, and when you’re in the moment, in the situation, you can’t see what everybody else does.”

She said participants in her monthly support group talk most about the added stress, financial responsibility that comes with being a primary caregiver, and dealing with health appointments.

“Those that aren’t educated, that don’t take full advantage of understanding the disease itself, but just jump in and just do because it’s what you do as a family or friend, it can wear on them as far as the stress,” she said. “And if they already had any medical issues, that stress can culminate into something else.”

 

Research needed

Lambert said that funding Alzheimer’s research is important because it is the only leading cause of death that has no effective treatments or ways to slow or cure the disease.

“That is what the rapid and urgency around this disease is, is the number of individuals impacted is only going to grow exponentially if we don’t change that trajectory,” Lambert said. “… This diagnosis, the earlier we can make a diagnosis, the more time a family has for planning and that individual can be actively involved in that planning, around financial, around legal, around, you know, wishes for health care, and that they are still very much a productive member of our community.”

On a bad day Jackie’s memory lasts seconds, and if he hasn’t seen family members or friends recently, he won’t recognize them. Gail is always worried about where he is and what he’s doing when the aide isn’t there.

“I have to be aware of where he’s at at all times,” she said. “It’s like taking care of a small child.”

The most important part of caring for a loved one with dementia is focusing on patience and understanding of the disease, Gail said.

“To remember that this is not something that they can help,” she said. “They’re not doing things on purpose, they’re not deliberately going in drawers or pulling things out. As long as they’re safe, then let them go through the drawers, let them take things out the closet. You can put it back later. Just be patient with them.”

Lambert said the scope of the problem should warrant action.

“This is not someone else’s problem,” Lambert said. “This is our neighborhood problem, this is our next-door-neighbor problem.”