A family’s journey with Early-Onset Alzheimer’s Disease.
This article was written by a guest contributor, and the views, thoughts, and opinions expressed in this article belong solely to the author.
The kitchen table. It’s a place to gather. It’s the place where families eat their daily meals, do their homework, talk about and dream up their futures, and celebrate life’s happy milestones. And sometimes, it’s a place to seek comfort in times of sorrow. That’s where my family found itself on a cold February evening in 2016.
There were signs that something was off for my dad, John, prior to his diagnosis, but nothing that prepared us for the major life-altering information. He had lost his job the previous summer due to “job performance” issues and was having trouble remembering how to get to places he had travelled to many times.
My parents decided to be proactive and went to dad’s primary care doctor and to a neurologist for diagnostic neurocognitive testing. On Valentine's Day he was diagnosed with Early-Onset Alzheimer’s disease, at age 58.
We gathered around our kitchen table: Where do we begin and how will we figure this out? How do we have this conversation with all our family and friends?
Dad was young when he was diagnosed. That meant my mom, Susan, was also young (54), and my siblings and I were in our 20s. This would dramatically change our world, just as anyone dealing with a dementia knows. Fortunately, my family had the medical experience to get the ball rolling on working through this diagnosis and illness.
"Over many cups of tea and coffee, we worked together as a family to devise a plan to tackle this disease."
– Frances McInerney
John [left] and Susan [right].
My parents had met while in nursing school 35 years ago. As we discussed our feelings about Alzheimer’s, they both went into “nurse mode”.
One of the first things dad made clear to my brother and me was, “Don’t wait too long to place me somewhere”. He knew my mom would wait until the last minute trying to use all her nursing tricks to keep him home.
Although his brain was sick, he was already thinking about us and planning his future. Over many cups of tea and coffee, we worked together as a family to devise a plan to tackle this disease.
Caring for dad
For her part, mom researched clinical trials, medications, doctor appointments and much more, while supporting him in adjusting to a new reality. One could say they experienced an acute role reversal. Mom switched to a full-time nursing position and dad was at home.
Susan [left] and John McInerney [right].
Nurses are taught from day one that they are their patients’ number one advocate and navigator of the medical world. This became mom’s role for dad; she was his number one advocate and navigator.
As a nurse, she used her skills to ensure medications were scheduled and taken correctly. It was difficult for my dad to relinquish control of his medications, but we had noticed times where some of the medications were not taken or he had forgotten the time. And later, he developed physical trouble with swallowing his pills.
Mom also became his research partner in clinical trials he was eligible for. This meant strategizing her work schedule to attend required office visits and time-specific testing, getting him to 7 a.m. MRIs, record keeping behaviours at home, and sitting through many sessions of cognitive testing.
"There were pictures of clothes on drawers to help my dad know where his clothes were. These visual cues worked well during the early to mid-stages of his disease process."
– Frances McInerney
I was in graduate school for speech language pathology when dad was diagnosed. I also happened to be in a neurogenic class. This class focused on how speech and language is impacted by neurological disease and brought up a wide range of mixed feelings.
The McInerney family
I was learning about everything that was most likely going to happen to dad. This was terrible but I chose to look at it from a different angle: I could use my knowledge to help him, and by extension, to help mom.
I decided that I would focus on helping with his communication skills. First, we decided that we needed to get dad into a routine. By establishing a routine early, he would be able to maintain his independence for a longer time.
I put pictures around the house to help with his daily living activities. In his bedroom, there were pictures of clothes on drawers to help dad know where his clothes were, and pictures in the kitchen where the cups and dishes were. These visual cues worked well during the early to mid-stages of his disease process.
Dad's final years
John McInerney in 2020.
The kitchen table is where we would continue to strategize over the years with countless cups of tea. Dad was able to contribute to conversations for a while, but the disease progressed and eventually took its toll. Then it was mostly just mom and I. Together, we continued to problem solve and work our way through the days, constantly reprioritizing what were once routine tasks as dad declined.
Dad passed away on August 26, 2021, after many days spent taking walks in the neighbourhood, making cards for family members and friends, and cheering on all his favourite Philadelphia sports teams.
GET MORE INFORMATION
Frances writes more about her experience as a care partner on her blog and Instagram.
ABOUT THE AUTHOR
As the former primary caregiver of her father, John, who was diagnosed with Early-Onset Alzheimer’s, Frances worked in tandem with her mother to navigate the ups and downs of the disease. During her experience living with and caring for her dad, Frances was able to use her expertise as a speech-language pathologist to facilitate verbal and non-verbal communication, promote interpersonal relationships, and support his independence with daily living skills.
Frances’ passion for advocating for individuals with neurological impairments, such as Alzheimer’s disease, paired with extensive experience with speech and language intervention, provides a unique perspective.