A Roland woman’s final act, a donation to Alzheimer’s Association, in her father’s honor
For Kay Jacobson Stanley, Father’s Day is a day filled with special and fond memories of her dad, Norman Amos Jacobson.
Better known as Jake to many, Kay and her siblings, Jon and Becky, fondly recall rides with him in the former over-the-road long-haul trucker’s 18-wheeler, vacations spent on the water that involved skiing and boating, and the anticipation, in later years, of visits down South to Alabama, on the Gulf of Mexico.
Father’s Day is also for appreciating the time she and her siblings spent with their dad during a difficult last couple of years.
Stanley, one of five Roland-born siblings, said subtle changes in her dad’s behavior might have appeared as early as 2009.
She recalled instances of Jake repeating the same story within a single conversation or forgetting the last time he spoke to her on the phone.
Jake was beginning to show symptoms of the progressive neurodegenerative disease, Alzheimer’s, currently ranked as the sixth-leading cause of death in the United States by the National Institute of Aging.
“The disease starts slowly and subtly, so it’s hard to recognize early signs,” Stanley said. “Since Dad did not live near us, we are not sure when he first started showing signs of Alzheimer’s. Sometimes, when I talked to him on the phone, he would comment that he had not talked to me in a while when I had spoken to him the day before.”
Alzheimer’s disease causes brain cells to progressively degenerate and die. According to the Alzheimer’s organization, an estimated 5.8 million Americans ages 65 and older are living with Alzheimer’s dementia in 2020.
The impact of Alzheimer’s disease is irreversible, severely eroding a person’s cognitive and motor skills, and symptoms often appear in a person’s mid-60s.
In a visit to Alabama in 2011, Kay and her sister noticed their dad — an avid boater — had given up driving his boat. After conversations with Jake’s friends, the Jacobson family knew they needed to move Jake back home to Iowa.
“It was on that trip that his friends took us aside and told us that we needed to move Dad closer to us,” she said. “We had been trying, but he was hesitant.”
That year, Jake and his second wife, Joanne, would move to Winterset to be closer to Kay and her brother, Jon. As the disease progressed, Jake was moved to a skilled care facility, a specialized care unit for people living with Alzheimer’s and other forms of dementia.
“This was a very difficult and stressful time in all our lives, especially Dad’s,” she said. “He did not understand why he could not be at home. He kept asking me if he was losing his mind. I would tell him, over and over again, ‘No Dad, but you are losing your memory.’”
Kay said her dad would exhibit occasional bouts of anger, but remembered an interaction with a woman whose husband was in the same unit as Jake that was insightful.
“A lady whose husband was in the Alzheimer’s unit with Dad told me not to be hurt by my Dad’s anger because we get angriest with those we love the most,” Stanley said.
While Jake’s decline in health was hard for the family, Kay said her dad never lost his notable sense of humor.
“It was so hard on the entire family, but, through it all, Dad never lost his sense of humor,” she said. “One day, when we were on one of our outings, I apologized for always taking the same route. He looked at me, grinned, and said, ‘It’s all new to me every time.’”
A daughter’s lasting gift
As Jake’s fight with Alzheimer’s took a toll on his body and mind, his family made sure to make the most of his final days in 2014.
Days before his passing on June 13, 2014, all four siblings, Kay, Lori, Jon and Becky, took turns being with their father on an around-the-clock basis.
On the eve of Jake’s death, Kay recalled a final moment with the “gregarious, fun-loving” man she called Dad.
“Dad had been sleeping most of the time and had not spoken in a while, and all of a sudden he yelled, ‘Help me,’” Kay said. “It scared me so badly that I threw my book and jumped about a foot off of my chair. Dad’s eyes flew open and he let out one of his famous belly laughs. Then he said, very clearly, ‘Funny, huh?’ I said, ‘Yeah, really funny!’”
Those would be Jake’s final words and a reminder of the person who admirably fought an unforgiving disease.
“It is so important for all of us to realize that, even though a person’s memories are fading, they are still the same person who needs to feel loved, valued and needed,” she said. “They still experience the same emotions that all of the rest of us do. Be kind and patient, even when it is hard. Do familiar things with them that they have enjoyed in the past.”
Following Jake’s death, Kay’s younger sister, Lori, began raising awareness of the disease which not only affected her family but the families of others suffering from the illness.
A few words Kay used to describe Lori include humble, outgoing and filled with a deep love for her friends and family.
“Lori always showed interest and concern for how everyone else was doing but rarely talked about her own problems or successes in life, unless asked,” she said.
Stanley said her sister once wrote, “I am a spiritual person who seeks to find the good in others and in myself, to live mindfully and to be grateful throughout.”
“She certainly achieved those goals,” Stanley said.
Lori worked at the Texas-based McAllen International Museum and the Los Angeles County Museum of Art. She later owned and operated her own consulting firm. She was also a talented drawer, painter and designer. She had a role in strategic planning for UCLA Women’s Reproductive Health Research Program and various projects for Iowa State University.
Lori has made donations to the Iowa Chapter of The Alzheimer’s Association and also participated in the Alzheimer’s Fundraiser Walk with her siblings.
But Lori had also been in a health battle herself. Diagnosed with breast cancer around 2008, Lori had been cancer-free for eight years before it ultimately metastasized.
The fight against cancer took a toll on Lori’s health, but never her optimism, Kay said.
Her death on Jan. 31, 2018, didn’t extinguish the depths of her love for her father and those intimately affected by Alzheimer’s.
Two years after her passing, Lori left one final gift.
By naming the Alzheimer’s Association as a beneficiary of her individual retirement account, Lori left a portion of her estate — totaling $90,000 — to the Iowa Chapter of the Alzheimer’s Association in the memory of her father.
“The Alzheimer’s Association is grateful and humbled by Lori’s generous contribution,” said Alzheimer’s Association, Iowa Chapter Executive Director Doug Bickford. “Caregiving for a loved one with dementia can be challenging. We are thankful that Lori chose to entrust our Association with these funds, so we may continue the vital work of local care, support and education for families in our state.”
Lauren Livingston, communication director for the chapter, said the funds will help support Alzheimer’s support groups and care consultation for Iowans affected by the disease across the state.
Additionally, a large portion of the donation will go toward ongoing research in efforts to find a cure for the disease.
“Because of Lori’s eternal optimism, she believed that she would beat cancer, as she had eight years previous,” said Kay. “None of us, except her husband, Jason Kogan, knew of her plans to leave part of her estate to the foundation, as well as a number of other foundations. Jason made sure that all of Lori’s final wishes were met. We are very grateful to him for this. He will always be part of our family.”
Kay added, “She would not be interested in accolades, only in knowing that her gift might help others.”
And while there is still no cure for Alzheimer’s, Kay offered some words of support for families affected by the disease: patience and kindness.
“Be kind and patient, even when it is hard,” she said. “Do familiar things with them that they have enjoyed in the past. Ask them for help with something that they are able to do. They want to feel useful, just like the rest of us. And never let them forget how much they are loved.”