As prevalence increases, families continue to struggle with emotional toll of Alzheimer’s

By Victor Xu
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On Oct. 12 after school, sophomore Molly Pittman entered the nursing home where her grandmother Euna Rose Pittman had been staying for the last two weeks of her life. All of them emotional, her parents, grandfather, sister and cousin stood around her grandmother’s bed where she had passed away just an hour before.

“When I first saw her I started crying,” Molly said. “It was just mainly hard to see my grandpa; he was really upset, and I’ve never seen him like that.”
That Tuesday, Molly’s grandmother lost a decade-long battle with Alzheimer’s disease, the leading cause of dementia worldwide. According to Mary Austrom, director of education at the Indiana Alzheimer’s Disease Center and member of the National Alzheimer’s Association Board of Directors, Alzheimer’s disease is a dementia involving progressively poor memory, reasoning and judgment that affects daily life. While some advances in treatment have occurred, no disease-altering treatments have been formulated.

The Pittman family was devastated when Molly’s grandmother, whom they described as articulate and energetic, was diagnosed with the disease in 2000, when Molly was seven. In the years since then, the Pittman family has undergone the ordeal of watching a loved one slowly deteriorate from his or her former self.

The struggles the Pittmans faced with Alzheimer’s disease will only become more commonplace in coming years. The Alzheimer’s Association recently released a report titled 2010 Alzheimer’s Disease Facts and Figures that showed the number of those afflicted with the disease would spike from 5.3 million currently to as high as 16 million by 2050, barring a cure is found. In Indiana alone there is expected to be a 30 percent increase in incidence from numbers from 2000 by 2025, and many western states may almost double in the disease’s occurrence.

Austrom attributes the growing incidence of Alzheimer’s disease to longer life spans, which increase risk. She said that as a large preceding population ages, there will be higher occurrence of dementia unless a breakthrough cure or treatment arises, meaning families like the Pittmans across the nation will carry a new emotional and financial burden.
Austrom, also a professor of psychiatry at Indiana University, said, “Besides the horrible loss in people’s emotional attachments and memories of their family history at a personal level, at a societal level, the cost of care will create a huge financial burden for the future—it is already.”

Caregivers to Alzheimer’s patients face a daunting task. According to the report by the Alzheimer’s Association, as the dementia develops, caregivers have to spend 24 hours a day feeding, bathing, dressing, administering medications and handling virtually all financial and legal affairs.

The report showed care-giving generally brings elevated levels of stress as well as negative effects on health, employment and finance. In 2009, around 10.9 million family members and unpaid caregivers donated an estimated 12.5 billion hours to caring for afflicted loved ones.

Steve Pittman, Molly’s father, said their family was fortunate enough to have the means to afford care for his mother. Molly’s grandmother remained under the care of her grandfather, her family and diligent caregivers who were hired. The family and caregivers made certain Molly’s grandmother had a balanced diet, good hygiene and exercise while she was capable of walking.

“We wanted to keep her in surroundings she was familiar with and would make her feel comfortable,” Mr. Pittman said.
According to Austrom, one of the biggest issues for caregivers is simply mental and physical exhaustion. She said family members often have to reduce or quit work and diminish their social lives to provide care to a loved one.
“Imagine if someone can’t remember their way home, and they go for a walk, or they forget how to cook or how to take a shower,” she said.

However, for Molly and Mr. Pittman the most difficult part of taking care of Molly’s grandmother was dealing with their emotions as she became a shell of her former self.
“It was hard watching her go through that and watching her lose the ability to care for herself,” Molly said. “but I think it was mainly hard just to see my grandpa lose his wife…It was really difficult to watch her go through it because before (Alzheimer’s disease developed) she was so outgoing and involved, but then after she would begin to look different and didn’t really remember anything.”

Mr. Pittman said it was incredibly difficult to witness his mother losing her sweet, loving and caring personality and instead becoming timid and disillusioned.
“She progressed gradually with this disease into a fog where she could not communicate with us and eventually do anything on her own,” Mr. Pittman said.
“Her every need had to be attended to.  One felt helpless watching her change and move farther and farther away from the person we knew and loved.” He added that his religious faith had been a major way to cope with his grief, knowing that his mother had gone to a better place.

Wilson Pittman, Molly’s cousin, another grandchild and senior, also pointed out that his grandfather had the hardest time seeing Wilson’s grandmother deteriorate.
“She was less and less herself as the disease progressed,” Wilson said. “After a time she would do little more than mumble, almost sounding like she was humming. I was very young but I knew it was very sad especially seeing my grandpa around her. He was always near her and anyone could tell that he still saw her as the young lady on the day of their wedding.”
Molly said experiencing Alzheimer’s firsthand changed how she views the disease. She said she believes if she had not dealt with the disease, she would be less cognizant of the illness and those who suffer from it.

She added that her personal support for research to develop a cure or treatment dramatically increased due to her personal experiences.
According to Austrom, participating in events like the Memory Walk for the Alzheimer’s Association and donating to research funds helps, but the greatest contribution one can make is considering studying neuroscience to develop a cure.

However, she also emphasized simply being there for an Alzheimer’s patient. “Just because they can’t remember doesn’t mean that you don’t remember,” Austrom said.
“Visit them, talk with them, remember for them.”

Mr. Pittman said that through his experiences dealing with dementia, he has gained a newfound appreciation for patience, understanding of human weakness and value of relationships with others. He stressed the need for these values while comforting Molly’s grandmother as the disease progressed.
“While (Alzheimer’s patients) lose their abilities to communicate, I believe that they still feel the warmth from a hug, a hand being held, and a smile,” Mr. Pittman said.

When Molly’s grandmother passed away that day, Molly and Wilson said they felt comfort in their extended family quickly reuniting to celebrate her grandmother’s life at the funeral.
“She will always be remembered as the loving wife to my grandpa, the caring mother to her kids and the devoted volunteer to her community,” Wilson said.
“At the funeral I heard all the funny stories of her and the loving but stern way she parented my father, uncles and aunt. Grandpa called her his drill sergeant.”

Inevitably, such processions will become more regular by the year; according to the Centers for Disease Control and Prevention, Alzheimer’s disease is the sixth leading cause of death in the United States and the only one that is significantly growing in prevalence.

Mr. Pittman said that in the end, despite the struggles and grief, caring for his mother had been a humbling experience around which his family rallied and grew closer.
“It can devastate a family both financially and emotionally or it can bring a family closer together and help you keep your priorities straight,” he said.
“I’m very grateful for every second I was able to have with my mom and I’m hopeful that my children developed a tenderness and a heart for people who are suffering from this disease or any other difficulty.”