Remembering the time Mom started forgetting

Probably overdue in posting this here. Part 1 of ‘Mom and me,’ which I wrote for The Coastal Star in 2010….

A month ago I watched an adult film with my mother. Let me explain.

My mom has advanced dementia and lives in a nursing home. Her roommate has satellite TV, with the TV big enough to share, but she’s not so good at working the remote.

The roommate was surfing the channel guide, ended up in the adult pay-per-view section, and before I knew it, the ‘Confirm’ button was highlighted on the screen. I got up to grab the remote before she hit ‘Enter,’ but it was too late.

I won’t go into details, other than to say this: The cast members were beyond foreplay, it’s a 50-inch screen and the volume was high.

Pandemonium ensued until I finally got it off the screen.

Amid the debacle, though, there was something to treasure and to marvel over: My mom laughed.

At that time, she never smiled, let alone laughed.

Susan Clara Nivens, my mother, is only 62. She cannot reliably feed herself, does not walk, and usually cannot tell you the color of the sky if you ask, although she can surprise you. Her demeanor is usually expressionless. When she talks, it’s monotone.

West Palm Beach, 2009


Three months ago, she was in the St. Mary’s ICU on a breathing machine with pneumonia. She has clots in her leg and is on blood-thinners.

If the professionals are right, she is most likely in the last year of her life. So it takes a real jolt to generate enough electrical activity in her brain to cause laughter. Apparently, spontaneous porn on a giant TV screen is enough.

I’ll take it.

Small pleasures are really all I have left with my mom.

•   •   •

In the 10th grade, I wrote an essay called A Mother Made of Steel, about the trials that my mom went through after a divorce from my father and then the death of her second husband. She had devoted her life almost entirely to my brother and me, working hard as an administrative assistant, keeping troubled marriages as much out of our view as possible, clipping coupons, wearing K-Mart clothes, splurging on absolutely nothing, saving for my college and always making sure that we knew, as we grew up in a Baltimore row house, that there was nothing in the world more important than us.

My heart always went out to the poor people of the world, the people I heard about on TV, not realizing we were pretty much poor ourselves. I gave the essay to my mom.

She kept it for 20 years.

•   •   •

And things never got any easier for her.

When I went to college, my brother and his wife moved in with her, along with their two children, which became three. They had terrible substance abuse problems. I tried in vain, year after year, to persuade my mom to show some tough love and kick him and his wife out. She could never muster it. After college, I moved to Florida for a job. I ponder now what might have happened if I’d lived closer. I tell myself that my mom always really wanted me to do what was best professionally. But I wonder.

By the fall of 2008, seeing my mom’s mental condition declining and my brother’s substance abuse continuing, my wife and I brought my mother, brother and niece to live in Florida. (My brother’s other two children and wife had moved out.)

A month later, I got emergency custody of my niece, whom I’ve since adopted. I got guardianship of my mom. My brother moved back to Baltimore. He has since passed away. I haven’t told my mom.

•   •   •

My mom lived with us for a month. It was the strangest time of my life. She would come out of the bathroom with her underwear on top of her pants. Or worse, wearing no clothes at all, setting off a panic before she was redirected. She would constantly reheat coffee and not drink it. In the car, she’d ask 50 times where we were going.
It was impossible to care for my mom, raise my niece and work, too. I moved my mom to an assisted living facility. It was the most painful thing I ever did. But I knew I had no choice.

•   •   •

The younger a person is when dementia sets in, the faster it progresses. It’s like a roller coaster with a bunch of downhills but no uphills. Steep drop, plateau, steep drop.
In September, she started declining severely. She would pace relentlessly at the assisted living home, resting only fitfully in a chair in the TV room. Her speech grew quieter and quieter, then went away almost completely. I tried to capture voice fragments on a recorder.

She started having problems swallowing. One day, we got a call from the assisted living facility. My mom had fallen in the dining room at breakfast and turned blue. She was taken to St. Mary’s Medical Center. She had pneumonia because of food in her lungs.

She was there two weeks, much of it with a tube down her throat. I held her hand and stroked her hair for hours on end. She couldn’t respond to what I said. I kept asking her to ‘gimme a squeeze,’ and she’d squeeze my hand every time. Every time, I was relieved.

She was eventually released, but the prospect of getting food in the lungs again hangs over us like a storm cloud.
I chose a nursing home, and she’s living there now.

•   •   •

I’d heard great things about Hospice of Palm Beach County. I called them and eventually I decided on palliative care, with more emphasis on comfort than anything else. My mom will not go to the hospital again. And she won’t go on a breathing tube or a feeding tube. When death is imminent, we have the option of bringing her home. For a while, I felt every minute I spent with my mom could be our last.

Her speech came back. She mostly says one word at a time. Her default word is, ‘Yes.’

‘How are you feeling?’ ‘Yes.’

‘How was lunch?’ ‘Yes.’ Sometimes she gets out short sentences. They’re all bonus words, ones I might never have heard.

I’ve taken to talking to my mom at extremely close range, often with our foreheads touching, looking her in the eyes so closely that she has nothing but my eyes in her field of vision. We are like lovestruck 18-year-olds.

I tell her, ‘I love you,’ to which she almost unfailingly responds — repeats? — ‘I love you.’ Sometimes, she gives the more reassuring, ‘I love you, too.’ Sometimes, I strive for more acknowledgement: ‘I love you very much, mom. You know that, right?’ ‘Yes,’ she says.

I press my hands to her cheeks to feel her warm skin. I know it will not feel warm forever, and that haunts me. I hug her repeatedly. I ask her for pecks on the cheek and she always delivers.

A change in her heart medication has helped make her more aware, but I know it’s not helping the actual dementia.

Our visits mainly consist of my pushing her to a pond on the nursing home grounds, hoping to see a wading bird or two, then visiting the nursing home chapel, and watching TV. If she sees a bird fly away and follows it with her eyes, or gets through two lines of a prayer without stumbling or is able to give me the name of the TV show we’re watching, it’s a great day.

I still ask her to ‘gimme a squeeze.’ Sometimes, she doesn’t, and says, ‘Yes’ instead.

•   •   •

A few weeks ago, my niece, my wife and I were in the activities room with her, playing the piano, and holding her hands and doing silly dances in front of her as she sat in her wheelchair. My mom started laughing and smiling ear to ear. My heart swelled.

A week or so later, I visited her alone. We again went to the activities room and I danced for her again. She started smiling. I kept dancing. Then she blurted, ‘Get me outta here.’

My blood ran cold. ‘What?’ I said. ‘Get me outta here,’ she repeated.

I didn’t know whether this was really coming from her or whether another resident had screamed, ‘Get me outta here’ recently and she was repeating it. But she seemed to be having a relatively good day and I worried that, at that moment, she was indeed thinking clearly.

I explained to her that if her health were better, everything would be different. I have no idea whether she understood.

I can only hope.

I can only look in her eyes, tell her I love her and caress her warm skin again.


5 thoughts on “Remembering the time Mom started forgetting

  1. It is agonizing. But even though the disease fundamentally changes the people we’ve always known, they still have the capacity and desire to enjoy life. But they need more help to do so. Thanks for reading this. Hang in there. I’m sure it’s making a difference.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s