Who’s That Lady? How Dementia Has Transformed My Mother

A daughter adjusts to her caregiver role
Someone is sitting in my chair. Her name is Erica. She’s filing. Putting labels on manila folders to be precise. In my chair. In my mother’s hospital room. But why?
I’m glad to see that Mia is up sitting in the chair wedged between her bed and the dressing unit with built-in drawers, closets and a mirror. Mia is no longer wearing a thin hospital gown that reveals her backside only if she lets it since she’s nearly half the size she used to be. She’s dressed in navy ankle pants with four gold buttons rising from the side of each hemline, the catheter snaking out the bottom of her right leg, and a cranberry Long Johns top that I bought one Christmas since she gets so cold so easily.
She seems pleasant enough and happy to see me, but she wants her shoes. They cost too much money for “somebody” to steal them. “Where are my shoes?” she asks for the first of umpteen times.
Normally, her shoes would be in the closet, I think, but Mia didn’t arrive in her taupe Toyota Corolla that we no longer want her to drive or in my brother’s impressively shiny, brick red Explorer or its replacement that I have yet to see leave the garage. Two days ago, on a fall Friday evening, she came to the emergency room by ambulance, wearing fuzzy pink striped socks, and was transferred to the oncology unit, temporarily relocated because of renovations.
“Your shoes aren’t here,” I explain to my mother, whom I call Mommy or Mia, a term of endearment from my childhood and from my sister’s godmother’s nickname, Mama Mia. “You came by ambulance. Remember? You don’t have shoes here, because you didn’t need them.”
Mia cuts me a look that I’m not used to receiving; it’s a look reserved for liars.
I get settled into an oversize chair on the opposite side of the bed where another patient would normally be in this semi-private room that’s now private to keep Mommy safe. No flowers. No fresh fruits. No germy patients, or visitors for that matter. I warn family members that the doctor basically said we should keep our germs to ourselves and wash our hands often. That’s why my brother has installed motion lights in the downstairs bathroom of Mommy’s house and more antibacterial soap dispensers to minimize the places that my three nephews touch.
When an Aging Parent Gets Sick
Mommy was diagnosed with leukemia a year earlier and more recently with lymphoma. This is one of a zillion hospital visits since the mid-80s for congestive heart failure, pneumonia, bronchitis, a triple bypass, a quadruple bypass, heart attacks and complications of diabetes, brought on by steroids used to treat other conditions. She’s a trooper, to say the least, a warrior woman who fights any ailment. But the dementia is getting the best of her. It’s harder to fight what ails the mind.
A few weeks earlier, she spent part of her birthday on July 16th in the hospital, recovering from the insertion of a port in her chest for chemotherapy. We had a sugar-free cake, balloons and flowers in pink, her favorite color, waiting in the kitchen for her return home that afternoon. She doesn’t remember how happy she was on her 79th birthday nor that my sister and I had traveled home to Ohio celebrate it. We just didn’t know we’d be celebrating partly at the hospital.
A few weeks later, she returned to the hospital because her white blood cells were dangerously low. She was “neutropenic,” another new word in my medical vocabulary. She had gone to chemo earlier that Friday, but somehow she ended up on her bedroom floor out of sorts. My sister, a registered nurse, provided medical history to the paramedics through our sister-in-law on a long-distance phone call. She insisted that they take Mommy’s temperature. It was 99. By the time Mommy made it to the ER, it was 102.3. As soon as I heard that, I told my sister: “One of us should go home.”
My sister and I live about 30 miles apart in Maryland. She’s in Columbia, closer to Baltimore, and I’m in Bowie, closer to Washington, D.C. I was the logical choice since my sister, a lieutenant colonel in the U.S. Army, had reserves duty in New York the next weekend. I could arrange substitute instructors for my college classes. Any other loose ends, I could handle from Ohio. In my mind, I was already there. I entered flight mode as soon as I heard the words “ambulance” and “fever.”
Facing the Realities of Dementia
Mommy sounded weak when I finally got through to her on the phone in the ER. I decided to surprise her, so I didn’t tell her that I’d be there in the morning. Swallowed by the hospital bed, Mommy starts laughing as soon as she sees me—surprised but used to such surprises at this point. “What are you doing here?” I ask. She isn’t quite so sure herself. The stream of doctors throughout the day aren’t either, explaining that they’re administering a broad spectrum of antibiotics that they hope will narrow down once the cultures and other tests tell them more about her infection.
Everyone is pleasant and on point, so far, especially the weekend nurse, Doug, whom Mommy seems to like. That’s no easy feat at times. A former licensed practical nurse, Mommy can vacillate between being a good patient and a bad patient on a good day. Saturday was a good day; Sunday wasn’t. That’s why Erica was sitting in my chair, and that’s why Mommy was fully clothed instead of wearing the magenta pajamas I grabbed out her bedroom on my way to the hospital.
At 6 feet 5 inches or so, Doug seemed sturdy as one of Akron’s maple trees on Day One, when Mommy was bedridden. He was calm, cool and collected—professional and efficient with a good bedside manner and occasional jokes. On Day two, he seemed as if he had seen some things—not necessarily rattled, but a bit surprised that such a tiny woman could raise so much hell. In other words, Mia had turned out the joint. And she was impressively strong, Doug added.
What a difference a day makes, even though she still wasn’t out of the woods yet.
As the day wore on, I saw signs of what Doug had seen and what my brother witnesses on the regular. I didn’t know whether it was the fever, the medication, the unfamiliar surroundings or the dementia kicking into a higher gear.
At times, Mommy blended hospital and home, insisting on going upstairs to get her shoes and irritated that all of us would allow her to remain in her stocking feet. She’d get up to leave this place or to head to the bathroom or to go to “none of your damn business.”
She was oblivious to the tubing tethering her to the bed and monitor, or the leg compression device to minimize blood clots. I worried that she’d inadvertently yank out her catheter or the IV tubing connected to the port in her chest or the line for her blood transfusion. I became quite adept at pushing the nurse’s call light on the sly for the duration of her visit while trying to intercept her sudden attempts to visit the bathroom or escape altogether.
Despite all my research and questions, I was unprepared for what I saw and experienced over the next two weeks—so much so that the stress overwhelmed my already suppressed immune system and knocked me off my feet for another two weeks or so. I don’t recall feeling that sick and unable to shake it in years. On top of that, I developed an allergic reaction to penicillin, which I had taken more often than I care to remember since childhood. But I digress.
Suffice it to say that I didn’t recognize the wonderful woman I love beyond belief. True, she’s always been sugar with lots of spice, but this was something different. This was something far beyond her legendary “island temper” from her Haitian and Dominican roots, tell-offs, moments of tactlessness or impatience with customer-service reps that too often results in abruptly ended phone calls. This was beyond Martin Landau as an enraged Robert Malone in “Lovely, Still.” This was Jekyll and Hyde.
A Caregiver’s Learning Curve
For me, experiencing dementia in full throttle is like experiencing childbirth. No one can really explain exactly how it feels. I liken childbirth to a personal earthquake with a rainbow at the end. At its worst, dementia is like watching a volcano that unexpectedly erupts over and over again.
A friend whom I met months later sent me a few articles on dementia that I wished I had read beforehand. Combined with brochures I later read, they provided clarity on a few key points. Both touched upon the volcanoes, going beyond standard statements that the elderly can be a little “disoriented” by hospital stays. They discussed the role of infections. I didn’t realize that infections and dementia can be a volatile mix—even urinary tract infections, which plague some people as they age, and especially unspecified infections that land you in the hospital.
Mia was discharged for a few weeks of rehab at a nursing home, which started off with a bang, not the good kind, but it got better with each day. By Thanksgiving, she was well enough to visit me in Maryland. She was going to return for Christmas, but had to have emergency surgery for a bowel obstruction caused by scar tissue from previous operations. We all spent the holiday around her hospital bed.
As Mia’s dementia progressed, bits and pieces of her memory would slip away. At times she tried to mask it, but she often acknowledged that she could no longer remember certain people or certain things. She not only forgot about her birthday, but she also has no memory of her half-dozen hospitalizations in 2011 or Thanksgiving or Christmas. She doesn’t remember that my sister and I have lived in Maryland for more than a decade, her numerous visits and lengthy stays, nor that I’ve been divorced for six years.
Beyond her three adult children, she’s sometimes fuzzy on the rest of our family tree. Surprisingly, she never forgot that my son, her first grandchild, had fathered her first great-grandchild. Ironically, the baby was born a week early on her 80th birthday.
Shortly after this double milestone and blessing, Mia had three seizures that landed her in intensive care and then more rehab for a few weeks, or so we thought, at another nursing home.
The medical team informed us that she had maxed out on physical therapy and was no longer compliant anyway. We were told that she was a safety risk in need of 24-hour care, which none of us could fully provide for assorted reasons. Until then, we had been successful in our goal to help Mia remain in her two-story home as long as possible.
Unfortunately, we had reached a crossroads in her care sooner than expected, particularly with the threat of seizures on top of Mia’s frailty, health history and fear of falling. Her fear became reality when she slipped and broke her hand. Mia’s doctors, the home-health agency and others agreed that the nursing home was an ideal option. The site was one of the best in town and rarely had openings. If we gave up her space, she might be stuck with a less desirable location in the future. So she stayed.
My siblings have made peace with the new arrangement. I’m still conflicted. It helps that my mother likes the place and its people—and that we do, too. It helps that she calls it her apartment—even suggesting that I spend the night during my surprise Thanksgiving visit. It helps that many staff members genuinely love their jobs and are attentive not only to Mommy, but also to us, which is reassuring when you live in another state. The charge nurse on my mother’s original floor still remembers me and hugged me when I walked through the reception area. So did the admissions director. In three decades of dealing with medical professionals, no one has ever hugged us.
For me, the TLC says a lot. With Mia’s dementia, it’s more important than ever that her medical team is on top of her care, that things don’t fall through the cracks and that compassion outweighs expediency. During some previous hospital and rehab visits elsewhere, we’ve had to complain about over-reliance on physical restraints, overmedication, an unnecessary referral to a geriatric psychiatric unit and bedside manners, or lack thereof, that press Mia’s buttons. We want her golden years to be golden, whether she remembers them or not.
Editor’s note: This essay was written in late 2012; Yanick Rice Lamb’s “Mia” passed away Easter Sunday, 2014.