Caring in the dark: A wife’s experience with her husband’s undiagnosed dementia
When Jackie’s husband Tony started showing signs of cognitive issues, she thought it was just normal aging. When their daughters insisted Tony see a doctor, the doctor refused to give him a dementia diagnosis even as Tony’s symptoms worsened. Unfortunately, because Tony remained undiagnosed, Jackie didn’t have access to resources she might have otherwise known about. Jackie shares her story of learning how to care for her husband on her own.
A loving father
Tony was an intelligent man and a talented athlete, running the Boston marathon three times. Born near Manchester, England, he met his wife, Jackie, in London. A few months after they were married, Tony applied for an engineer position with General Electric (GE) in the United States beginning his career in the power business. The couple moved to Schenectady, New York and four years later had their first of three daughters.
After 11 years with GE, Tony and his family moved to California where he began working for the Electric Power Research Institute in Palo Alto. The couple enjoyed traveling together especially when Tony’s work had him traveling in the summers, Jackie, who was a teacher, would join him. The family inevitably settled in Silicon Valley and lived there until Tony’s death in 2023.
“He spent a lot of time when the girls were little playing sports, rock climbing and running,” said Jackie. “They all played soccer because he played for years. He was a smart, funny guy. We had a great life together.”
Forgetting
In his seventies, Tony participated in a biking group for seniors. As time went on, Tony kept crashing into things that seemed avoidable and found himself regularly on his way to the hospital. Other members of the group were never really sure what happened, telling Jackie that he would just veer off the road and crash into things.
Jackie soon noticed that Tony was forgetting how to do things, like back the car out of the garage, or where things were kept. “I remember getting mad at him sometimes,” said Jackie. “I would say, ‘Can you help me take the garbage out?’ and he’d just look at me. Later on, I felt so very guilty. He didn’t know what was happening, and neither did I.”
Not normal aging
Jackie thought that these things were just the normal signs of aging, however their daughters disagreed. With their insistence, Jackie finally agreed to take Tony to a doctor. Tony was given a test by the doctor, and while it seemed clear to Jackie that it was dementia, the doctor was hesitant to give a diagnosis. “The neurologist told me, ‘Yes, he is definitely losing some of his function, but I can’t say at this time if he has Alzheimer’s or dementia,” said Jackie. “That’s why this was so difficult, there was no diagnosis.”
Unfortunately, at around this same time, the COVID-19 pandemic was spreading across the nation causing business to shut down, including dementia related services. “Our lives really shut down,” said Jackie. “He couldn’t go out with his biking group. The day centers shut down; he was just stuck with me.”
Jackie knew that Tony’s mother had dementia and recognized the same signs in Tony. Despite his lack of diagnosis, Jackie decided she would just move forward with the caring for Tony as if he had been diagnosed.
Caring for Tony
According to the Alzheimer’s Association, 83% of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers. About 30% of caregivers are over the age of 65 and approximately two-thirds are women.
Alzheimer’s takes a devastating toll on caregivers. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties. Of the total lifetime cost of caring for someone with dementia, 70% is borne by families — either through out-of-pocket health and long-term care expenses or from the value of unpaid care.
In the beginning, Jackie, with the help of her daughters, cared for Tony full-time at home. Because Tony was never diagnosed, Jackie wasn’t offered any resources and had to find everything on her own. “I did a lot of reading and online research,” said Jackie. “I had to do everything myself. It was hard. I needed a little help in the house just so I could get out and go food shopping.”
Jackie began changing things in her home to better accommodate Tony, like adding in a lift for the stairs and placing the bed on the floor in case he fell out of it. However, as Tony’s dementia got worse, so did his coordination. “He’d start to walk and fall over. He’d be sitting on a bench, stand up and go crashing down,” said Jackie. “A dozen falls. He’d get really banged up. He weighed 200 pounds and I couldn’t get him up. I had to call my neighbors and the fire department for help. [They came so often,] I got to know their names.”
“One young fireman said gently, ‘You might want to look into some kind of memory care [setting] for Tony.’ Iwas reluctant to do that. I should be able to take care of him myself. Even now I [think I] should have made some changes at home, I could have somehow finagled something. Not that [the care setting] wasn’t great, he was happy. I still feel a degree of guilt from having to moving him there.”
Jackie and her daughters visited Tony regularly until his death in October 2023 at the age of 82.
Find support
As a caregiver, you may find yourself with so many responsibilities that you neglect taking good care of yourself. But the best thing you can do for the person you are caring for is stay physically and emotionally strong.
“Do as much research as you can,” said Jackie. “If you don’t already have a support system, try and build one. To be without anybody to support you would be very, very hard. Try not to give up on your own life as much as you can, [keep doing] whatever it is you enjoy doing.”
For more information on caregiving such as stages and behaviors, caregiver health, support groups, daily care and more visit our website at alz.org/caregiving.
