Getting to Know Dementia

Write What You Know July 2025

I have been asked, both online and in person, how I learned to be so positive when dealing with my mother’s dementia. The answer lies in a combination of direct experience and self-guided research over a number of years.

My first official success with writing came when Michigan History Magazine published “Getting to Know Your Neighbor.” As the story goes, in the mid-1980’s, my family was living in Oscoda, Michigan, near Wurtsmith Air Force Base. Our neighbors across the road were an elderly couple, John and Mafalda (Mae) Maritote.

Here’s the introduction to my story:

Mae Maritote sat quietly while a nursing home aide combed out her long, grey hair. A television in the room was tuned to the local station where Geraldo Rivera was promoting his upcoming expose, The Mystery of Al Capone’s Vault. The vault, under the Lexington Hotel in Chicago, was soon to be opened “live” in a two-hour special. Mae glanced at the television just as a black and white photo of a cocky Al Capone flashed on the screen. “Look”, she cried, pointing to the screen, “there’s my brother, Al.” The young aide gave a laugh. “Sure Mae, whatever you say.”

Although suffering from dementia, Mae was telling the truth. Alphonse “Scarface” Capone was, indeed, her brother. Mae’s husband, John, chuckled to himself as he told me that story after returning home from a visit with Mae at the nursing home one day in April 1986.

Mae’s odd behavior had increased in the months leading up to her being admitted to the nursing home. More than once during the summer of ‘85 I glanced outside to see Mae standing in her driveway dressed in a winter coat, hat and boots. John told me she often put pans on the stove and forgot about them. One night my family awoke to a fire truck in front of the house. Smoke was pouring from the Maritote’s kitchen window. Thankfully, the stove fire was extinguished quickly and no one was harmed.

On another occasion, I watched from my front porch as John took a slow walk up the road. Mae, standing in the driveway, waited until he was just within hearing range. Then, in a voice louder than I knew her capable of, she bellowed John! Long distance telephone call! before quickly disappearing back into the house. John turned around and trudged back home to discover that, of course, no one had called.

Mae Maritote provided my first recurring exposure to a person exhibiting signs of dementia. At the time, all I knew to do was help out whenever I could. Mae, for the most part, avoided my family and would not talk to us. John, however, gradually learned to trust us.

He moved Mae into the nursing home not long after the kitchen fire and visited her often. His load lightened, he became a more outgoing member of the community, as well as a friend to my family, and a surrogate grandpa to my young sons.

Watching what John went through caring for his wife made it abundantly clear to me how physically and emotionally draining it was for a man of his advanced age. That is when I first began to understand the toll dementia takes on caregivers.

Fast forward to late 2016.

Just as I had seen John Maritote try to take care of his wife years before, I watched, now, as my mother, Irene, tried to take care of my father as his mind and body began to fail him. Each time I visited them, I witnessed my dad’s declining memory and his inability to remember familiar things: accessing email and files on his computer, remembering the route to the store, or recalling names and faces of people he’d known for years.

Mom is a proud woman and, as such, refused the idea of in-home help. She said she could handle it all. Meanwhile, each time I visited, I could see how tired she was. Dad was 93 and she was 89. I also noticed that mom was showing signs of odd behavior. While she still cooked, cleaned, took care of the finances, and drove the car (especially after dad had two minor accidents in the parking garage), she began saying strange things.

As I wrote in my unpublished book, Just Call Me Irene, there were several episodes which had me wondering about her mental state. While we chuckled about them at the time, they now seem like the tip of the iceberg.

When I visited my parents in September 2016, mom came out of the bathroom one day asking who was shoveling snow? I looked at her incredulously - it was almost 70 degrees and a warm breeze was blowing through the open deck door. Yet, she was sure someone was shoveling snow. Following her back into the bathroom I could hear a faint wooshing noise and tracked it down to the bath faucet which had not been tightly turned off. Indeed, there was a noise. But snow shoveling?

For a few years, she had often insisted there was music playing. In hindsight, she was correct, but it wasn’t anything anyone else could hear. By 2016 she heard it more often and said it was a male choir.

Of course, my father loved that. He began asking each day if the choir was in good voice. What were they singing today? Mom would roll her eyes and give him THAT LOOK. Despite his failing health, dad could still make mom laugh.

When mom moved to Ontario, soon after my dad’s death in 2017, I realized that she was struggling more and more. The confident, no-nonsense person I knew was fading fast. She had become anxious, was seeing my father in the living room, and kept insisting she had to take care of “the children.” Hallucinations, I had read, can be a symptom of Alzheimer’s and also Parkinson’s Disease.

On a visit to her doctor’s office, I asked if there was any medication that might help alleviate her anxiety and the hallucinations. He said the medications available would do her more harm than good, “at her age,” but he offered no other advice – medical or otherwise. He was less than helpful, and I thought him rather rude: basically, she’s an old lady. What do you expect?

I left the doctor’s office determined to find out everything I could about Alzheimer's and dementia so began my research to make daily life better for mom…and, in turn, for myself. Many websites I visited mentioned the importance of a Caregiver. I had never thought of myself in those terms but was about to realize that’s exactly what I had become in a very short time.

It was time for more Research, Research, Research. My goal was to be prepared for what was coming.

Dementia is an overall term for a set of symptoms that are caused by disorders affecting the brain. Symptoms may include memory loss and difficulties with thinking, problem solving or language, severe enough to reduce a person’s ability to perform everyday activities. A person with dementia may also experience changes in mood or behavior.

Dementia is progressive, which means the symptoms will gradually get worse…

Dementia is not a specific disease. Many diseases can cause dementia…[they] can have similar and overlapping symptoms. Alzheimer’s Society, Canada.

Although my mother was still the same person I’d known all my life, differences were creeping in. She was now “Irene 2.0” and I had to learn how to navigate the “new” Irene. There was no other option.

In 2020, mom’s “choir” began practicing again while I was living with her during Covid-19. Now she became agitated. I Googled possible causes. What I found out made perfect sense given mom’s hearing loss in one ear and hearing aide in the other.

Photo by Олег Мороз on Unsplash

Musical ear syndrome (MES) is a condition that causes patients with hearing impairment to have non-psychiatric auditory hallucinations. In advanced age, it could be confused with dementia…Hallucinations are usually musical in nature and can range from popular music, orchestral symphonies, or radio tunes. www.ncbi.nim.nih.gov

I shared that information with my mother. She was delighted knowing she had a condition that could be found on my cellphone. She decided she would listen more closely to the choir to determine what they were singing.

I was also delighted knowing that something she was once concerned about, was now something she viewed as entertainment. And, in the following months, she did report on various songs she recognized along with Christmas Carols as the holidays approached.

In the months and years that followed, mom and I spent 95 percent of our time together, isolating in her small apartment because of Covid-19 restrictions. There were many times I became frustrated at the close proximity, the constant repetition, and mom’s increased anxiety and confusion in the early evening. I had heard of Sundowner Syndrome through friends but needed to know more.

Photo courtesy of Mary McDonald

The Mayo Clinic defines Sundowning this way:

Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. Sundowning can also lead to pacing or wandering. Sundowning isn’t a disease but a group of symptoms that occur at a specific time of day that may affect people with dementia…

Thankfully, aggression was not something that materialized in my usually peaceful and agreeable mother. For that, I am grateful.

But she was certainly Sundowning. She insisted we had to cook meals for a number of unspecified people each night. My telling her she wasn’t running a Boarding House did nothing to deter her anxiety that we would not have enough dishes prepared. I became quite good at re-directing her attention to other matters which did not include cooking multiple meals.

As I’ve written previously, she also began denying that some of her clothing was hers. When a small pile of underwear appeared on her dresser, she told me she was waiting for the owner to pick them up. I really hoped that we would not find ourselves in a Lady Godiva situation - my mother had never ridden a horse.

Calling on the humor I saw my dad use with mom during their marriage became my way of coping with our daily interaction. Mom responded quickly with her customary eye rolls and THAT LOOK she always reserved for my dad when she would say, “Really, Basil.”

When mom became paranoid about checking all the doors in the apartment before going to bed at night, my dad’s humor kicked-in again. I would open a closet door, shut it quickly, and announce to mom, “There’s a party going on in there. But they promised to keep the noise down.” Night after night I repeated that. Night after night, mom laughed out loud! It made the bed-time routine much easier.

Mom’s habits and behaviors changed from month to month. Once again I researched dementia and Alzheimer's so I could know what to expect. In my mind, knowing what to expect is half the battle.

I found a list of DOs and DON’Ts, from Alzheimer’s San Diego, to be very helpful. I’ve paraphrased them here.

DO give short, one sentence explanations. DO avoid insistence. Try again later. DO agree or distract. DO accept blame for something, even if it’s fantasy. DO respond to feelings rather than words. DO be patient and cheerful: go with the flow. DO practice 100% forgiveness.

DON’T reason, argue, confront, remind the person that they forgot, question memory, and above all, DON’T take it personally.

During my visit with mom last month, we sat chatting and looking out the window at the Marshall Gowland Manor sign which states, “Adult Enrichment Center.” Every few minutes mom would ask me, “What does Enrichment mean.” I gave her a brief explanation each time.

The ninth time she asked, I turned the question back to her. “What do YOU think it means?”

Without missing a beat, Irene’s response came back. “If I knew I wouldn’t be asking you would I?”

That’s Irene. Sarcastic, tells it like it is, and doesn’t suffer fools gladly! Now we can laugh, like two old friends, about the silliest things - which she forgets five minutes later!

I believe I’ve learned how to navigate Irene 2.0. But if a new version is released, I’ll continue to learn and will appreciate whatever comes.

Besides the resources I’ve highlighted in this post, there are many other reputable sites to help caregivers understand the dementia rabbit hole. DON’T hesitate to ask for help and DO all the research you can.

Thanks for reading this month’s post. I always enjoy your comments and will respond if asked a question. See you next month.