Family Denial of a Dementia Diagnosis

Kitty Norton is the author of the Stumped Town Dementia blog, written during her caregiver years. When her caregiver journey ended she created and directed the dementia family caregiver documentary Wine, Women & Dementia. A special one-hour version is airing on public broadcast stations across the country, and may be viewed anytime at PBS.org. Kitty Norton and her sister Lexie Fields co-cared for their mother Gloria, who lived with vascular dementia. Gloria went on to her next adventure in March 2021. You can find Kitty on Instagram, Facebook, and TikTok.

“Grab your coat, Mom. Time to get out there and start forgetting things.”

Mom’s doctor, a serious woman with a cut-and-dried manner, looked at us both aghast. But my mother’s countenance, with devastation roiling over her face like an angry sea, finally broke into a cautious smile and returned my sly wink.

“Okay,” she said softly as we walked out the door into an entirely different future. 

It was 2010. Mom had just been diagnosed with mild cognitive impairment, likely to develop into dementia. I was relieved. For the last two years, Mom had been “off” — repeating questions, forgetting birthdays, or what she was doing, or where she was and why. Now we knew what we were dealing with, and could access medication that could potentially slow the progress. 

It didn’t occur to me that others might have different and very strong emotions other than relief.

“I don’t think she has dementia. I think she’s just drunk!”

My father spent the first two years of Mom’s diagnosis repeating this theory to me. Sometimes adamant. Sometimes with a hint of doubt. Always with desperation in his voice. As Mom progressed from mild cognitive impairment (MCI) to vascular dementia, I was bewildered by my father’s denial. While I wasn’t overjoyed that dementia was in my family’s future, I already knew that whatever took my parents out of this world was going to piss me off royally. At least with dementia, we would have time, and that was a blessing. To me.

But for my parents, the future they had envisioned had been blown up in one sentence. And as the debris fell around them they both took cover in denial. 

Mom worked hard to disguise her symptoms from Dad, from us, from everyone — creating strategies that allowed her to “pass” as a cognitively functioning adult. It didn’t work. What she did succeed in doing was heaping guilt and stress upon herself, opening up a path for dementia to zoom ahead in its progress, fueled by the tension of a secret she couldn’t keep. I saw fear in her eyes when she misspoke, or couldn’t access a word or a memory, and it broke my heart. 

For Dad, it enabled an impenetrable wall of isolation to rise up around the two of them. He didn’t want people to think of her differently or see her as incapable or mentally ill so his answer was to keep to themselves, severing ties with their small friends and family circle.

Mom slowly became less burdened as her fear of making mistakes fell by the wayside. When asked if she knew a particular fact or remembered a previous event, she would reply with a laugh: “Don’t ask me. I don’t remember anything!” I couldn’t tell if she had come to terms with her diagnosis, or had simply forgotten she had one, and found humor felt better than fear when confronted with things she no longer knew. 

Dad’s acceptance was of a different nature. Masked with a smile, his tales of everyday life rarely mentioned how he and Mom were coping. Whenever I managed to ask about their emotional well-being, he would often end up in tears, lamenting the things Mom could no longer do. He struggled to acknowledge their new reality. 

My sister finally convinced Dad to attend a monthly support group. After strong resistance, he found comfort and strength in connecting with others, and he couldn’t wait for future meetings. Things were looking up. Sadly, we didn’t know then that it was the last six months of Dad’s life. He was diagnosed with pancreatic cancer later that year, and died within three weeks.

My early acceptance of the diagnosis was nothing more than choosing the right side of the coin toss by happenstance. And in Mom and Dad’s rigid “Nothing to see here, folks!” approach, I often wondered if there was something wrong with my acknowledgement of the new norm. But as time went on, I saw the stark difference it made in our individual journeys. 

For one, Dad died half-way through Mom’s diagnosis, and this is no small thing. Studies show that between 18 to 40 percent of caregivers die before their person living with dementia. Sit with that for a minute.

Fighting the dementia diagnosis took so much of Dad’s energy that he had little left for Mom, and none for himself. I often wonder if he had been able to accept it sooner, would he have had time for his own health, and maybe had a few additional years with us?

The stress and strain Mom needlessly went through trying to hide her symptoms provided a huge opening for dementia to hit full throttle. When all of that dissipated, progression slowed, and Mom found her spark — albeit a very different spark, and not always a welcomed one — but life surged within her again.

While I was by no means a perfect caregiver (rarely even a tolerable one), I’m grateful that I got this right. By accepting the reality of dementia early on, my sister and I were able to connect with “new” Mom so much sooner, honed an ability to adapt faster, and saved ourselves some of the heartache of fighting a disease that would eventually win in the end.

Kitty Norton’s film Wine, Women & Dementia.

When a diagnosis slams into your family, there’s a whole lot of changes headed your way. To get a running start, here are some strategies that worked for us, and may help get you over that first hurdle of acceptance:

1. Therapy, counseling, support groups, social media groups! A place where you can share your frustrations, fears, and learn from others who are on the same rollercoaster ride. Community is the single most important thing for all involved, and it makes a big difference in how you and your loved ones get through this.
2. Gut punches — forgotten names or important dates — will knock the wind right out of you, especially in the early days. For me, reacting in a neutral manner, with no correction or judgment, kept Mom’s stress levels down and dementia at a diminished pace. (I would fall apart later when I was alone or with friends, hence Strategy #1 Community is where it’s at!)
3. For everyone, this is an incredibly stressful journey! Minimize stress as much as you can by:
   • Calling the Alzheimer’s Association or your local Aging and Disability Resource Center or Area Agency on Aging* for resources in your area.
   • Learning more about the dementia journey. Start easy like foods that improve brain health. Take classes (in-person or online) about what to expect and best practices for caring for a person living with dementia.
   • Have some fun! Unless the diagnosis comes very late in the progression, there is a whole lot of life to be lived on the end of life journey. Look for local music or performance events to attend. Head to the movies. Join a dementia choir or attend a memory cafe. Hit your local senior center for activities or social events to participate in.

Always, ALWAYS, be kind to yourself. Dementia is tough stuff for all involved. If you have to spend the first two years trying to convince everyone that your person is just a lousy drunk, so be it. We all make multiple mistakes in this adventure. Learn how others are coping and then do what feels right — and be ever so gentle with yourself if you find out later you did it all wrong. It’s what we are all doing, over and over and over.