From July 2018 to March 2020 (the beginning of quarantine) I learned through trial and error how to navigate our new life.

Be advised: the learning curve for facing and dealing with a loved one’s dementia never flattens.

The journey forward is perilously steep, twisted, and rutted, but sometimes, at the bend in the road, you find a scenic view, which makes the way smoother.

In no particular order, interspersed here are the bumps in the road and the pleasant views.

In early days, Nana still had her cell phone at hand and for a while my phone rang with the same regularity. At last I was off the hook for taking away the car, though she sometimes insisted she could still drive.

Now, of course, the principal question was, “When can I go home?”

I repeated the same reasons unnumbered times. You fell and broke your hip. You cannot walk. You are in a wheelchair. We would have to make your house handicap accessible. You could not get up your porch steps. We would have to remodel one of the bathrooms so you could get in the shower.

She still insisted none of this had to be done and she could manage just fine, also insisting she could indeed walk. Sometimes I would say, “Show me.” And she would plant her hands on the arms of the wheelchair and try to push up, only to realize she could not stand on her own.

In these early days, her walker sat in the room, unused. At one point, I asked the supervisor if there were any point in having it available. When she said no, I took it home, did a little research and donated it to an organization that provides devices for people in need.

This situation was preferable, because at this point, walking meant increasing the likelihood of another fall, and I did not want us to go backward.

More times than not, the cell phone was lost, the charger lost, or it was simply turned off, and she assumed it was “broken” and she needed a new one. One day, I discovered she was sitting on it in her wheelchair.

Eventually, I had the service discontinued. There was a phone two steps outside her door, and she learned how…or was helped…to use it.

The Sundowners’ Syndrome continued and late afternoon calls were often frantic and/or hostile.

Some days Nana was remarkably lucid. Some days she was completely “lost,” and there’s no other way to word it…out of touch with reality.

The most memorable of these incidents was when I came to visit and found her in a state of abject panic.

“Oh, Holly, Annie died, and I have to call Carl and tell him.”

For readers who do not know: Carl is my father’s name. He passed away in 2008. Annie was his mother.

Once I sat down and we started talking our way through this, my mother was honestly relieved to find out it was all a mistake. After several minutes, I tried to lighten the moment by pointing out if my grandmother were still alive, she would be 124  years old. That brought a smile and eventually, an honest-to-goodness laugh.

One of the questions she most often asked was, “When did Carl die?”

She was honestly shocked to find out it had been twelve years ago.

I kept plenty of up-to-date photos of our family on the wall above her television. Almost every visit, I reviewed who was who. Sometimes she would remember. Sometimes not.

Often she thought I was her sister and that my daughter was me.

Once my daughter told my mother she had a surprise, which was they were going to get a puppy.

Nana guessed: “You’re engaged.”

The wedding had taken place 13 years before.

This is an important point to stress: Check any website about “what not to do with a dementia patient,” and every single one will advise—“Do not ask, ‘do you remember?’

They don’t.

Go back over the information again.

In some cases, they will be relieved. In some cases, honestly happy about the good news they had forgotten. 

And what of the “scenic views” I mentioned? The benefits of this stage of my mother’s life?

Forming friendships with the staff and other residents of the Beacon Community.

For the sake of their privacy, I will not mention real names here.

Bob: a Vietnam veteran (printed on his cap) who said he would go back if he could, but it was time for someone else to serve.

Walt: a Navy veteran always pressed and dressed, who was in the same chair every day and always extended a hand.

Rachel: a sweet-tempered lady who daily put her belongings in a laundry basket and placed it on the seat of her walker, prepared to leave for her home in Alabama.

Rose: a gentle soul, who was looking for her car, so she could drive home. She asked me where it was. I told her it was being repaired and that relieved her mind.  

Hazel: a feisty German lady, who was delighted when I used what little college German I remembered to greet her. One Christmas we sang, “Stille Nacht,” together.

Mary: a beautiful lady, often lost, I was able to escort back to her room, and locate the Bible she was searching for.

And last, but certainly not least: Catherine, my mother’s roommate, who often asked me to help her make her bed or tuck the blanket around her feet, and told me how wonderful and beautiful I was every time I saw her.

These people—and their families—all enrich my life, and have made the way brighter.