'My Mother Has Dementia, But It Feels Like I'm Losing My Mind'

"Where am I?"

"You're in your room, in my house."

We've been having this conversation every fifteen minutes, every day, for the last year and a half.

My 98-year-old mother, Angelina, was once one of those women people describe as a force of nature. A single, working mother before it was a thing, she was like the Mad Men's Helen Bishop, both envied and scorned by the Betty Drapers of my Bronx neighborhood. She is the woman who began working at the phone company as an operator and retired as an executive; the woman who became the matriarch of my extended family after my grandmother passed away; a member of the Greatest Generation who always let common sense be her guide.

Ten years ago, she began to complain of "confusion"—though she could never put her finger precisely on what she felt confused about. Five years ago, it became clear she could not handle money anymore, so I did her grocery shopping and took over her bill-paying duties. Three years ago, we had to take cooking off the table as well, and I brought my mother her three meals. (As her apartment is across the street from me in Manhattan, it was not an inconvenience.) A year and a half ago after a gallbladder attack and six weeks in a rehab facility, my husband Neil made me face my denial of the fact that my mother was no longer who she once was, with two simple words: "It's time."

Lorraine Duffy Merkl
Lorraine Duffy Merkl and her mother, Angelina. Courtesy

And so Angelina moved in with us, into the empty childhood bedroom of my 26-year-old son Luke—now an electrical engineer and long since living on his own.

I made the decision not to put her into an assisted living home because of what I saw during her stint in rehab—not abuse, but benign neglect, spreading despite the caregivers' best intentions. Overworked nurses and aides simply were not able to answer every call bell the minute it rang with patients waiting to go to the bathroom, or requiring some other basic need to be met; food being distributed to a whole floor in one go, so it often arrived not quite hot; patients calling out for loved ones and being ignored, in the hope they'd tire out and fall asleep. I ended spending morning 'til night by my mother's bedside, trying to do my work on my laptop while I picking up the slack for the staff—I sometimes felt like they should have cut me a check. And frankly, it wasn't just safer and more comfortable for Angelina to live with us; it was also easier for me, sparing me the commute to the facility and the expense of running out to purchase satisfactory food for her to eat.

Since she's been here, my mother sleeps a lot. When she's awake and lucid, we can still have a chat, and at meal times she feeds herself. But dressing and bathing needs my assist, and because Angelina can't be left alone, whenever I need to go out, Neil or my 23-year-old daughter Meg take the reins.

I get many compliments and kudos for taking my mother in, but don't feel I deserve them. I'm doing what I need to do. She took care of me, and when Luke was born, my mother moved from our outer borough to help me, so I would not become a "Mrs. X" a la The Nanny Diaries.

Supportive relatives tell me how bad they feel for me, to have so much on my plate. But what no one seems to understand is that giving my mother her meals (which I make for myself and family anyway), taking her to doctor appointments, helping her get put her clothes on, keeping vigil while she's in the shower—none of these things is a big deal to me. Pushing her in her wheelchair when we're outside leaves me a bit winded from time to time, but we have a service at our disposal called Wheelchair Taxi, which is like Uber but the cars can accommodate her mobile aid.

The thing that is actually driving me crazy is watching the deterioration of someone who I not only love with all my heart, but already miss terribly. "It's like taking care of a child," said a well-meaning neighbor. No. No, it's not. Children have their life ahead of them. You take care of kids with the intention that they will one day go out into the world and be able to care for themselves. With an elderly parent, their life is behind them; ahead is death. You're basically keeping them comfortable and contented until it comes.

And there are no shortcuts or easy solutions here, at least not for me. One relative, who thought she was inventing the wheel, chimed in that I should have an aide come in. Neil and I had already discussed this at length. My mother was never a social person, keeping her circle tight with family members and one close friend, with whom she shared a fifty-year relationship (longer than most marriages), until the friend passed away almost ten years ago. A stranger in the house would cause her—and me— more aggravation than it's worth.

Recently, two cousins who live in another state were so upset over my lack of sleep because Angelina wakes up startled during the night and needs to be reassured that she's safe, that they offered to drive in to give me a day to myself to "go to lunch, get a manicure or a haircut." I explained that I appreciated their concern and proposal, but if I wanted to do any of those things, once again, Neil, Meg and when he can, Luke, would provide coverage. What I need is a magician to give me back the woman I knew; the one who would argue with me over just about anything, was the first person I'd call to go see a movie like "The Devil Wears Prada," or served as my stylist when Neil and I had a social or business function to attend.

As "Merlin" will not be showing up anytime soon, and to keep my sadness from morphing into depression, I mask up and get outside. I don't need much to feel better other than fresh air and movement. Luckily, New York is a walking city, so I try to get out at least for a half hour each day, but on Saturdays—sometimes alone, often with Neil as my wingman—I get in my 10,000 steps. Neil and I also try to go out to lunch or dinner on the weekend as well.

I come back home with a clear head—but "Where am I?" still awaits.
There's a theory I read somewhere that if you change your own behavior it will change that of those around you. I decided to put it to the test by switching up my answer: "You're with me and you're safe." And I repeat it, like a charm, when the question returns fifteen minutes later.

Lorraine Duffy Merkl is the author of two novels. Her third, The Last Single Woman in New York City, will be published by Heliotrope Books.

The views expressed in this article are the author's own.