The Dementia Daughter By Nicole J. Smith GUEST EDITORIAL
I flew to Iowa in June of 2021 to be with my dad when they placed a shunt in his brain to drain excess cerebrospinal fluid due to Normal Pressure Hydrocephalus, yet another type of dementia. I began calling myself a dementia daughter and devoured books, films, podcasts, and personal stories to learn as much as I could about the syndrome. Dementia is recognized as a spectrum of neurodegenerative disorders. Some of the symptoms and behaviors related to dementia are common, but everyone’s experience is unique. Many people do not know that changes in the brain can begin 10-20 years before symptoms appear. Many early signs are missed because they are dismissed as senior moments, depression, or boredom. The US POINTER study determined that 45% of dementia may possibly be prevented through lifestyle behaviors: adequate sleep, stress reduction, diet, exercise, socialization, and lifelong learning. Memory loss is just one sign of dementia. Dementia can present as lack of executive function, getting lost in familiar places, confusion about seasons and dates, changes in personality, apathy, and story repetition. Changes are often subtle and sporadic at first. We called them “that’s weird” moments when we realized in hindsight the signs were there with Mom, but dementia was not on our radar. We didn’t know what to look out for. Frustration and confusion about decision making can be common for some. Mom was overwhelmed by reading the menu at a restaurant. Choices are difficult. When her food finally arrived, she denied ordering
the dish and blamed the mistake on the waiter. Paranoia and false accusations are common in those with dementia. They slowly retreat into their own reality. I finally learned that no amount of logic or explanation would work. I became educated on using distraction techniques and ‘fiblets’ or therapeutic fibbing, to allow Mom to remain confident in her own mindset. There was no point in trying to correct her. We had a difficult time navigating the legal, medical, financial, logistical, and emotional challenges of figuring out how to get help for Mom and convince her to move. My Aunt Nancy became my lifeline and partner in creating a plan. You cannot do this alone. A support network is critical to survive as a caregiver. Caregiving is overwhelming and exhausting. Caregiver creep happens when a daughter stops by to drop off a prescription or prepare a meal for aging parents. Within a couple of months this escalates into doing laundry, washing dishes, walking the dog, managing medications, booking appointments, and more. Many daughters are also working full time and raising their own kids when parents begin requiring more help and attention, whether they admit it or not. Distance makes this infinitely more difficult. We began building a team of family, friends, and paid professionals to work through the vast unknown. Nancy the nurse managed the med portals and discussions with doctors, we hired an elder law attorney, and we toured senior living communities.
Three of my parents were diagnosed with a different form of dementia within the same year. The family was spread across the United States and I became a cross-country caregiver before I was even aware of the term. My dementia discovery began in March 2020, right before the world shut down. I flew from my home in New Jersey to visit my mother in Los Angeles and accompany her to a baseline neurology appointment. She was in denial and I was clueless as to what this might mean. I would have been more insistent on bringing her back to New Jersey with me if I had known the shutdown would last more than two weeks (as originally predicted) and that social interaction is critically important in preventing cognitive decline. I knew nothing, I was green. In 2021 Mom went to a follow up neurology appointment that resulted in an Alzheimer’s diagnosis. She refused to believe it and she demonstrated anosognosia, a condition where the person with a disease denies the signs and symptoms. I learned the difference between dementia and Alzheimer’s disease. Dementia is the umbrella term for various forms of cognitive decline, Alzheimer’s being the most common. I learned my mom’s older sister suffered from vascular dementia. In 2021 my stepmom was diagnosed with frontotemporal dementia at age 70.
Page 4 | May & June 2026, Never Too Late
Pima Council on Aging
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