My Mother's Caregiver: Here to Serve

In our Resource Library, we pride ourselves on providing quality, timely and informative articles, publications and videos developed by our staff at Benjamin Rose Institute on Aging. Through our Guest Blogs, we are now welcoming caregivers to share their experiences, wisdom and insights from their unique caregiving journeys with our Resource Library readers. Please note that the views expressed in these blogs are those of the writer(s), and do not necessarily reflect the views of Benjamin Rose Institute on Aging.

Writer and photographer Mark A. Lee was born in Indianapolis, Indiana, the youngest of three children. In April 2014, Mark received Cicoa’s Caregiver of the Year award for acting as primary caregiver (alongside his mother) for his father, who had Alzheimer’s and emphysema in the last two years of his life. Since then, Mark assisted the Indiana Historical Society create a photo exhibit in 2015 based on thirty-years-worth of his work. “A Visual Journey: From AIDS to Marriage Equality” has subsequently been made into a traveling exhibit and is touring the state of Indiana. Mark is currently caring for his mother and writing a book called “Raising Dad”, which chronicles his experiences with his father.

Saturday August 19th, 1972
Jasper, Indiana

The high humidity and sweltering Indiana heat caused me to sweat profusely as I laid down in the back of my mother’s station wagon. We tried to roll down the windows, but the air was stagnant, and it made things worse instead of better. Our neighbors down the street had air conditioning in their car; but despite my sister’s numerous protests throughout the years, Dad didn’t think it was worth the money. 

By the time we arrived at the nursing center in Jasper, Indiana, both sides of the pillow I brought to help make the drive more bearable were drenched with sweat. 

My mother and I drove three hours south every other month so Mom could visit with her grandmother. Once we left Indianapolis the radio reception was sporadic at best and there was nothing but endless rows of corn stalks for miles and miles around. Sleeping was by far my best option.

I was nine at the time, and three hours in a hot and humid car felt longer than the two weeks that led up to Christmas. Had we driven another forty minutes south to Santa Claus, Indiana the trip may have been worth it. Instead, we visited with my great-grandma Lamb who lived in the nursing home on top of the hill. It was there that I was introduced to the rancid smell of death and decay at an early age.

As my mother and I entered the nursing home, there was a cafeteria to our right, where several residents slept in their wheelchairs and waited for the next meal to be served. And to our left and down the hall was the main lobby where my great grandmother waited for us to arrive. 

The vinyl floor tile was well worn and bare in spots. A decrepit looking man made guttural noises that made no sense, and drooled as we walked on by. The stench of used diapers was almost unbearable.  

At any given time, whether we visited in the morning or the afternoon, a dozen residents were scattered about. Most of them were asleep in their own filth. Others would look longingly at my mother and me and wonder if we were there to visit them. In the middle of it all was my great grandma Lamb. Her face lit up when she saw us and she waved for us to come closer.

Irene Lamb was eighty-four, and to a young boy she looked to be well over a hundred. Her wrinkles had wrinkles, and her hands were cold and clammy as she grabbed hold of my face. “Oh my… let me look at you! You are such a pretty young girl.”

“I’m a boy, grandma.” 

My mother attempted to laugh it off. “This is Mark, grandma. He’s getting a haircut as soon as we get home.” 

I started to say something about not wanting a haircut, but decided it was best to keep my mouth shut. My mother sat down and visited with her grandmother while I wandered around the residence. There were three hallways that led away from the lobby like the spokes on a wheel. I walked down the one labeled Third Avenue. At least three residents woke up from their naps long enough to mistake me for a girl. Perhaps it was time for a haircut after all. 

I wasn’t quite old enough to understand everything about where my great-grandmother was staying, but I knew I never wanted to return to a place like this if it could be helped. Nothing about it was inviting. And the strong odor of excrement and vomit stayed with both my mother and me the entire drive home. Neither one of us wanted to stay in a place like this unless we absolutely had to. And when the time came to make a decision about my father, we didn’t want him living in a nursing home either. It was more than either one of us could handle.

Excerpt from “Raising Dad” 
By Mark A. Lee

****

March 23, 2020
Indianapolis, Indiana

When I entered my father’s den, Mom was slumped down in her brand new lift chair with a magnifying glass positioned between her glasses and Tom Clancy’s latest book. My father passed away on September 5th, 2013 but I still thought of this room as his den. Located in the back of the house, there was baseball memorabilia from the St. Louis Cardinals mounted on the walls, as well as certificates and diplomas from when he became certified as a CEO, and an enlarged photo I gave him on his seventy fifth birthday. It was a photograph of both my father and my mother with seventy-five years-worth of memories superimposed on top. “Neil Diamond. Eddy Arnold. Glenn Campbell. 75.” The list of items exemplifying who my father was and things he used to say went on and on. Even the books on the bookshelf remained the same. The only change in the room was the removal of his rocking chair after my brother, sister and I gave Mom a new lift chair for Christmas.

My mother was engrossed in her book when I entered the room. “Morning Mrs. Lee. I’ve got your pills for you.” Most days I refer to her as Mom, but on days when I’m clocked in as her official caregiver I get a kick out of referring to her as Mrs. Lee.  I consider myself to be extremely fortunate to have been hired by Senior Home Companions as my mother’s primary caregiver shortly before the nightmare of COVID-19 began. I set her pills down on the nightstand next to her lift recliner.

Mom glanced up from her book and screamed when she saw me. “You scared me.”

Great. It’s only my second week in the official capacity as her caregiver and I’m already on the verge of giving her a heart attack. “Are you wearing your hearing aids?”

My mother shook her head no. “I just washed my hair. I’m letting my hair dry.”

I pulled up a chair in front of her and started to put on her socks. One of her toenails snagged the inside of her sock and I had to unsnag it before I could proceed. “You’ve got fifteen more pills to take.”

“I need something to drink. Do we have any more lemonade?”

Lemonade was new. Usually she asks for Diet Coke. “It’s in the kitchen.”

“May I have some?”

“I suppose…” Mom still didn’t have her hearing aids in, so she couldn’t even hear me when I teased her. So I spoke up. “Anything for you, Mrs. Lee. I’m here to serve.” If you ever want to hear my mother laugh, tell her I’m here to serve.

****

My mother and I were determined to let my father live his final years at home. As such, we kept our complaints to a minimum for fear my brother and sister would talk us into sending him to an adult care facility. After our experience with my mother’s grandmother, as well as a similar experience when my father was in rehab, an adult care facility was not an option for either one of us. My siblings both lived in California, so it made it much easier to keep the harsh realities of day to day living away from them. As my father relied on us more each day, it helped bond my mother and I together. 

Mom and I haven’t always been that close. When I first came out, she talked my father into sending me to a psychologist so I could be “cured”. When my first friend died from complications of AIDS she said the ones she felt sorry for were people like Rev. Wade, a hemophiliac who contracted HIV through a blood transfusion. In other words, it was through “no fault of his own.” Fortunately, we managed to work through those tough times and we worked together to care for my father.

After he died, I decided to stick around and help my mother in any way I could. Mostly I helped to lift her spirits, and to run all of her errands when she was no longer able to drive. It wasn’t until the first of the year in 2020 that she needed help on a full time basis. She had a few falls toward the end of 2019, and her doctor determined it was no longer safe for her to drive in February 2020.

The first person my mother thought of to help take care of her wasn’t me. It was Kelli. Kelli Anderson worked as my father’s caregiver the last year and a half of his life. She was the only person I knew who was a more voracious reader than my mother. Kelli had a keen sense of humor and got along with everyone in our family. She used to love to tease my mother about dropping me when I was a baby. “Mrs. Lee? You can be honest with me. I won’t tell nobody. You dropped him on his head when he was a baby, didn’t you?” Mom would just look at her and laugh. “Mmm hmmm… I thought so.”

Kelli was like a sister to me. And when she gave us the bad news that she could only care for my mother for a short amount of time because she had to start taking care of her own father in March, Kelli was the one who suggested I apply for a job with Senior Home Companions. “Why don’t you do it?”

“Do what?”

“Why don’t you take over as your mother’s caregiver? I know you know what you’re doing, and your mother is too damn stubborn to let anyone else take care of her.”

“I don’t think her insurance company will pay for family members.”

“They wouldn’t be paying you! The insurance company pays Senior Home Companions, and then they pay you. I already spoke with the office manager and she said all you had to do was give them a call and they’ll get things set up.” 

The thought never even crossed my mind. From a financial standpoint it makes a lot of sense. There is only a finite amount of money available in my mother’s Long-term Care Insurance policy. If we were to hire a stranger, we would have enough money to pay a couple of people for a maximum of sixty-four hours a week for the next five years. By hiring me instead, I could help my mother as an official employee of Senior Home Companions for thirty-two hours a week and her policy would last twice as long. Or if I were to work forty-hours a week her policy would last for eight years. 

From a personal standpoint, it means my mother can remain in the home she’s lived in for the last thirty-five years and won’t have to worry about being sent to an assisted living facility. Now that COVID-19 is a reality, I am beyond thankful I ended up being hired by Senior Home Companions to care for my mother in the comfort of her own home. Having her here has allowed me to make sure this is a safe environment with little to no chance of either one of us becoming infected. Now that we have both been vaccinated I can breathe a little bit easier once more.

“Mrs. Lee, here’s your lemonade.”

My mother’s hearing aids were back in, so she was able to respond without screaming. “Thank you.”

“Not a problem, Mrs. Lee. I’m here to serve!”

“You are so full of it.”

 Thanks, Mom. I love you too.