John Johnson knows a lot about the financial world. The Arvada-based Johnson writes an investment newsletter and has served as a business consultant. He’s also an active outdoorsman and loving dad to four children. But none of that prepared him for the challenges he would face providing 24/7 care for his father who was living with Alzheimer’s disease.
“Nobody really prepares you for the end stages (of Alzheimer’s),” said John. “It’s brutal. My dad wanted to live out his life in his house, so I was the 24/7 guy…his primary caregiver until he died.”
John’s father, Robert Johnson, was the last person John expected would ever succumb to cognitive issues. Robert attended Colorado School of Mines on a football scholarship and graduated as a petroleum engineer. Later, he earned his Bachelor of Law, Juris Doctor and an MBA from University of Denver. He served as mayor of Arvada, and for several terms in the Colorado legislature as representative and senator.
But Alzheimer’s disease doesn’t play favorites, and subtle symptoms of cognitive decline began to surface years before Robert’s formal Alzheimer’s diagnosis in 2013.
“Following my divorce in 2008, I moved in with my dad for a short stay, planning to move out within the year,” John said. “Then, as dad started falling apart, I thought ‘I guess I’m going to be hanging out with him a bit longer.’”
The growing signs
Back in 2008, John believed there was nothing amiss with his dad, who was still working full-time at age 78. But the early signs, which make more sense now, were beginning to show in the years before Robert’s Alzheimer’s diagnosis.
As Robert’s memory and typical attention to detail began to falter, he was encouraged to retire. And then came the telephone scams: callers from Jamaica promising Robert a sizable share of their wealth if he would advance them some cash.
“Dad was getting scammed,” John said. “They called incessantly, and he kept running to the bank to send them money. He sent them somewhere between $80,000 and $120,000.”
Everything became clear when Robert needed his son to drive him to the bank.
“That’s when I realized what was going on,” said John. “Everything came together and it was very obvious. After that, we went to the doctor for a diagnosis.”
The transition to caregiver
Robert’s Alzheimer’s diagnosis came in 2013, but he was still in the early stages of the disease, so John was able to get away occasionally for a weekend of skiing or other activities to break up the non-stop routine of caregiving, hiring caregivers to check in on his dad.
Once, when John took time to run an errand, he returned home to find his dad missing. He was able to track his dad to a nearby department store, where he saw a police car with his dad inside the store.
“Dad was good at making up stories and hiding his condition,” he said. “If you weren’t aware of his diagnosis, you wouldn’t think of it. In this case, the police officer was nice and polite, but I could tell she had no idea how to handle him. If she had taken him to the police department or hospital, that would have caused him a lot of anxiety and he might have lashed out.”
On another occasion, John received a call from the Arvada Fire Department that his dad had been found wandering away from home.
“That was the moment when I realized that this (flexibility to get away) had ended,” John said. “I could no longer leave him overnight. Previously I could get out and take care of myself and feel comfortable that he wasn’t in danger, but things changed. Caregiving became more 24/7.”
John also feared that the instances of wandering might cause Adult Protective Services to get involved, potentially causing him to lose custody of his dad.
Family members learning to cope
While John bore the brunt of the caregiving responsibility for the five years his dad lived with Alzheimer’s, he did get support from several brothers and two of his children.
“It was hard for one brother to accept that dad had Alzheimer’s and understand that dad’s not thinking rationally,” John said. “You couldn’t use logic (with dad) anymore.”
On the other hand, John learned a valuable coping skill from his son, Ian, then in his mid-teens.
“Sometimes I’d fight with my dad, but my son would say ‘if he wants to go, let’s get in the car and go,’” John said. “Ian said ‘just go with it.’ Life with Alzheimer’s needs to be more like an improv…agree and go with it. Ian showed some enlightenment and maturity. It’s interesting how you get educated by your kids.”
Becoming an Alzheimer’s advocate
Even before his dad passed away in 2018, John had already decided that he needed to share his experiences as a caregiver with others. He joined with the Alzheimer’s Association of Colorado to serve as a volunteer advocate to work with legislators to secure funding for research and advance legislation to better care for people affected by dementia as well as their caregivers.
“When I talk to people about Alzheimer’s, they think about the early stages,” he said. “Explaining to legislators about living through the end stages is helpful. It’s a brutal disease.”
As part of the advocacy team, John recently met with the office of U.S. Rep. Ed Perlmutter to urge his support of the Alzheimer’s Caregiver Support Act, which would provide grants to community health centers, senior centers and state agencies for training and support services for families and unpaid caregivers of individuals living with Alzheimer’s disease or another dementia.
“One of the key lessons I’ve learned through all of this is that you need help,” John said. “There are frightening stats about how many caregivers die before the loved one they’re caring for. There’s a lot of stress involved. Now I understand that. There’s a need for a lot of education.”
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.