My Mother's Caregiver: Treading Water

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.

Fall 1970
Indianapolis, Indiana

In the Fall of 1970, shortly after we moved into our new north side home, Mom enrolled me in swim lessons at the local YMCA. Every Monday afternoon Mom drove me to the Y and walked me to the entryway to the Men’s Locker Room a few minutes before four. And every Monday I would just stare at the door, afraid to go in, as someone pressed a loud buzzer that allowed me to open the door.

“Hurry up and get dressed, or you’ll be late for class.” The door buzzed again, and this time my mother nudged me to open it up and head to the locker room at the bottom of the stairs. 

The locker room was an intimidating place for a seven-year-old boy. More so when you were both scrawny and painfully shy. I used to consume large amounts of food, and yet it looked as if my parents never fed me. Most days I changed into my swim trunks in the middle of a bathroom stall. It was the one place in the entire locker room where I knew no one would see me. I then stuffed my clothes into an empty locker and made my way upstairs to the pool. 

I emerged from the locker room with a large towel wrapped around my shoulders. Even after I took swim lessons for several months, I never got over my shyness. As I entered the pool area, I waved at my mother. She was sitting behind a large row of windows on the other side of the pool and she pointed towards where I was supposed to be. 

The instructor was my sister’s age. She wore a red one-piece, and her voice echoed throughout the cavernous room as she gave a dozen kids instructions on how to tread water. Her assistant/boyfriend then divided us into two groups. Over half the kids were sent to the shallow end where they held onto the wall and learned how to kick, while four or five of us were sent to the deep end. After two months of taking lessons, this was my first time leaving the safety of the shallow end of the pool.

The noise level from the other kids was loud, and I only caught bits and pieces of what our instructor told us about keeping our head above water. We were told that treading water was a lot like riding a bicycle, only there were no pedals. She might as well have been Charlie Brown’s teacher. Nothing she said made sense to me.

Then came the moment of truth. Our instructor had us swim out to the middle of the deep end, and tread water for the next minute. I don’t know if she paid any attention to the clock, or if she was distracted by her boyfriend at the other end of the pool, but she didn’t seem to notice I had trouble keeping my head above water. 

I started to sink further and further down towards the bottom of the pool. I gasped for air and swallowed large amounts of water. The noise from the other kids became muffled as I thrashed about and tried to get my head above the surface. Bubbles were everywhere. I wanted to scream for help, but all I could do was swallow more water.

My mother BANGED on the window to get the attention of the teenaged flirt. When she finally looked away from her boyfriend to see what the fuss was about, my mother pointed towards me and yelled loud enough for the people at the front desk to hear, “My son is drowning!”.

I heard a muted thud as the instructor’s boyfriend dove in. The next thing I knew, he pulled me to safety at the side of the pool. I coughed up some water and sucked in as much air as humanly possible.

“Let me in! I want to see my son.” I gave my mother the thumbs up to let her know I wasn’t dead yet.

“That’s some punch you’ve got there.” The instructor’s boyfriend sat down next to me and pointed towards a red mark directly beneath his eye that started to swell. “You’re stronger than you look”

“I’m sorry…”

“Dude! It’s all right. You were drowning, and you started to panic. Here, sit next to me.” He patted the wet concrete. “Now, take in a deep breath and relax your body.” I followed his instructions as best I could. “Breathe in again. Now relax… If anything like that ever happens again, instead of kicking and punching, just relax your body and look for the bubbles.” I looked at him like he lost his mind.  “No matter where you are, bubbles are only going to float UP to the surface of the water. Follow the bubbles, and you’ll be able to breathe in fresh air in no time.”

Excerpt from Raising Dad
by Mark A. Lee 

*****

Sunday, May 3rd, 2020
Indianapolis, Indiana

This past week has been the first time I felt as if Mom had given up on wanting to live, and I was in way over my head. Trying to get her to get out of bed, or to eat any of her food, was like pulling teeth… only not nearly as much fun.

“Mom, you need to get up.”

“I know…”

“Today, Mom…”

She turned her head away from me. “I will.”

“Mom, you’ve been saying that for three hours now. You need to get up and eat something.”

“I know… I will” When we’re not going back and forth, she claims she’s too weak to walk out to the kitchen. This is usually followed by calling me a pest for trying to get her to do so. 

My mother is a prime example of what happens when you take care of the people around you and neglect your own health. My father entered rehab for a period of three weeks in October 2011. During that time Mom refused to leave his side and she slept on a lumpy couch next to him. She’s always had a bad back, but sleeping on this couch made it infinitely worse. It wasn’t until January 2014, four months after my father passed away, that my mother decided to do something about the debilitating pain. 

She had a pump surgically implanted into her belly. This pump delivered medication through a catheter to the area around her spinal cord. For six solid months after she had this pump implanted, it caused even MORE pain than she was in before. Her pain specialist tried changing the medication, increasing her dosage, and anything else he could think of, and nothing worked. Through trial and error, we discovered the catheter he implanted was pinching a nerve. The moment he moved the catheter down a couple of inches on her spine, the pain was gone. 

For the entire month of April there was a beeping sound in my father’s den. Throughout the month, I changed the batteries in every remote I could find, in the telephone, and in my mother’s bolo. The pump in my mother’s belly dispenses pain medication throughout the day; but if the pain is ever too much for her she’s supposed to place a device known as a bolo on top of her pump and press a button. The bolo will then send a signal to her pump to dispense even more pain medication up to ten times a day. 

It wasn’t until the end of April when my mother informed me she didn’t think her bolo was working. I had her attempt to use it while I was standing next to her, and there was an error message I had never seen before: 8286. When I looked up the code, it stated the pump was empty. There wasn’t any more pain medication in her system. The beeping sound we had been listening to for an entire month was her pump’s way of letting us know it was out of medication. Morphine. She was out of morphine for an entire month. And when her doctor refilled her pump a few days later, he informed us she would most likely go through withdrawals. 

Somewhere between the isolation and loneliness of being on lockdown, and the side effects of being cut off from her pain medication, Mom had lost her will to live. I was at a loss. I felt as if I was drowning, and in desperate need of having someone save me. To make matters worse, we were scheduled to have a Zoom call with the rest of the family at 7PM.

I knew it would take Mom a while to get ready, so at 2PM I told her she should probably hop in the shower so she could make herself look presentable for our call. Two hours later, she finally rolled out of bed and headed to the rest room. An hour later, and then again an hour after that, there was no sound coming out of the restroom.

“Mom… we’re talking with the rest of the family in another hour. Have you taken your shower yet?”

“I’m getting ready to.”

“OK, Mom. We really have to get moving. I want you to look your best when you talk with your California kids!” Silence. “Mom… That means you have to actually turn the water on so you can wash your hair!”

“I know…” A few minutes later the shower was turned on.

It was 7:30 before my mother joined the rest of the family on a Zoom call, and she looked HORRIBLE. Her hair was disheveled, she couldn’t keep her eyes open, and even though I made sure she put in her hearing aids, she couldn’t hear anything that was being said. And what she could hear, she couldn’t understand. I could see the look of horror on my siblings faces.

The next day I received a lengthy text message from my brother. Even though he had no doubt I was doing the best I could, he felt – and his wife and the rest of the family agreed – we needed to hire someone else to take care of her two or three days a week. As much as I agreed with everything he said, it was the middle of a pandemic. I had no desire for a stranger to enter our home and possibly infect both my mother and me. 
 
Tuesday May 5th, 2020
Indianapolis, Indiana

I was writing an email to my cousin when I heard Mom scoot on her walker from her bedroom to the kitchen. “Summer, you need to get out of my way.” Our dog reluctantly woke up from her nap and moved.

Mom’s voice was raspy, but she sounded the best I had heard her sound in weeks. When she saw me sitting in front of my computer, she went back to her old habit of barking orders. “Where’s my cereal?”

“Let me finish this note, and I’ll get it for you.”

Dressed in a bathrobe and slippers, Mom looked the best I had seen her for about a month. She drummed her fingers as she waited for me to serve her breakfast. It was a sign that things were getting back to normal. Mom then took two or three spoonfuls of her cereal and a bite of her banana before pushing them away and telling me she was done. “It doesn’t taste very good. I can’t really taste it at all.”

I stopped what I was doing. “Mom, can you smell anything?”

She thought about it a moment and shook her head no. “Not really.”

“How long has this been going on?” No response. I raised my voice.  “Mom!  How long has it been since you’ve been able to smell anything? A week? Two weeks?”

“About two weeks” She had been complaining that everything tasted like mush for a couple of weeks now, but I never thought to ask if she could smell anything. The air was closing in around me now, and I had to catch my breath.

I managed to set up a video conference with her doctor later on in the day. Meanwhile, I was wracking my brain as to how she could have possibly become infected. There was no proof that she was infected, but my mind had a way of going directly to the worst case scenario. I had literally taken every precaution known to man, and then some. I constantly disinfected door handles, counter tops, and any hard surfaces throughout the house. I washed her sheets several times a week, and I never left our house without a facemask and gloves. 

When we spoke with the doctor, I had to repeat all of the questions he asked her. I explained what had been going on, and he ordered a COVID-19 test for the next day. Due to the fact she didn’t have any symptoms other than a lack of smell, if she DID test positive, her doctor didn’t think he would do anything differently unless she started to have trouble breathing. Should that happen, he recommended sending her to the ER. As I listened to the doctor speak, I was mentally thrashing about and unable to breathe.

****

“I’ve tried to call Joan for three days now and no answer. Is she ok? Or maybe she doesn’t have her hearing aids on??? What is a good time for me to try again?”

Wednesday May 6th, 2020
Text Message from Sharen Edwards

Sharen was one of my mother’s best friends from church. She was the lifeline I needed. I responded to her text message with a phone call.  “Sharen, Mom’s better, but she’s lost her sense of smell. We just returned from having one of those cotton swabs shoved up her nose, but it’s supposed to be a couple of days before we find out the results.”

“How long has she been sick?”

“She’s been in bed for a few weeks now… and honestly, I didn’t think she was going to make it. Do you mind talking with her? Her hearing aids should be in now, and I think she’d love hearing from you.”

I can give my mother the medication she needs, and make sure my computer is set up so she can have a video chat with her doctor. The one thing I cannot do is be her best friend. They have a bond that only two women who have raised their kids together can share. At this point, everything about my mom seemed fine. Except for the fact she couldn’t smell.  And yet, I felt as if I had failed her and I was sinking further and further toward the bottom of the pool. “Mom, Sharen’s on the phone.” I handed the phone to my mother.

“Who is it?”

“It’s Sharen, Mother.”

“Sharen? I didn’t hear the phone ring.” As I handed her the phone, she stopped me before I could leave the room. “Can I have a Diet Coke?” Mom’s entire demeanor changed as she spoke with her friend. “Sharen? Is that you? It’s been too long…”

I walked out to the kitchen as they continued to talk and carry on. As I poured her a glass of Diet Coke, I stopped for a moment and watched as the bubbles rose to the top. The bubbles took me back to the side of the pool. The instructor’s boyfriend was probably the first crush I ever had. I couldn’t believe I punched him in the eye when he dove in the pool to save me. “You’re stronger than you look.”  When he said this to me, my perception of what it meant to be strong was different than it is now: I was the scrawny kid you saw on the back of comic books who was always getting sand kicked in his face, and he was a living and breathing Charles Atlas. It wasn’t until years later, when I took care of my friends who had HIV and AIDS; and later, when I helped to care for my father, that I realized inner strength was just as important if not more so.  As tough as these last few weeks have been, I managed to find some strength within myself to help me carry on from one day to the next. 

*****

We received a phone call the next day, letting us know Mom tested negative for COVID-19. I still have no clue why she couldn’t smell. Maybe it was a side effect from being off of her morphine for as long as she was. All I know for certain is that my mother is stronger than she looks as well. I closed my eyes, and I could see the bubbles rising to the top of the pool. As I followed the bubbles to the surface, I could breathe once more. When I opened my eyes, I no longer saw the woman who had been hiding away in bed for the last few weeks. I saw the woman who stood by father’s side and helped him, even when she was in severe pain. And in that moment I knew: I get my strength from her. Any strength I have comes from her.