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Human Infrastructure Is Real—Ask Caregivers

A woman holds hands of her elderly mother at "Las Praderas" elderly care home in Pozuelo de Alarcon, outskirts of Madrid, Monday, June 22, 2020. Spain on Sunday ended a national state of emergency after three months of lockdown, allowing its 47 million residents to freely travel around the country for the first time since March 14. (AP Photo/Bernat Armangue)

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A woman holds hands of her elderly mother at "Las Praderas" elderly care home in Pozuelo de Alarcon, outskirts of Madrid, Monday, June 22, 2020. Spain on Sunday ended a national state of emergency after three months of lockdown, allowing its 47 million residents to freely travel around the country for the first time since March 14. (AP Photo/Bernat Armangue)

When I opened my front door I expected to feel a blast of cool air, which would blow over the black hair of my bear-sized Newfoundland, Grace. On that second day of the most recent heat wave, I imagined the sensation of returning home would feel like the Nantucket Island breeze I’d just enjoyed. Two-and-a-half days, my first trip in 18 months. My first break in five years as a caregiver to my mother with Lewy body dementia and to an older brother who lives with mental disabilities. 

I had arranged for others to check in on them. My younger brother would FaceTime from his home outside New York City. Other friends and the neighbors were on call. My older brother knew how to give my mother her medication from her weekly pill dispenser, how to prepare her meals, how to change her slipper socks, how to operate the television. The arrangement wasn’t ideal, but it should have been fine for 56 hours. And so I took the advice I’d received from everyone from friends to healthcare professionals to practice some self-care. I picked a place I love, where I had worked during summers in college, driving a taxi. It was far enough away from our home outside of Boston that it felt like a real getaway, but close enough that I could be back in a couple of hours for an emergency. 

As I climbed my front steps, I felt good for the first time in years. Like a real person. My shoulders were unclenched. I wasn’t in “fight or flight” mode, which had become my baseline state of mind after years of worrying when (not if) my mother would fall. I had real conversations that weren’t about changing Depends, getting Tylenol, or making a doctor’s appointment. I expected to open the front door,  look down the hallway, long cleared of antique runners and 19th century tables, and see my mother sitting at the kitchen table by the large window with pink and white Petunias thriving on the deck in the background, and her aging fingers pecking at the iPad screen.

But my hand turned the knob and it was as if there was no difference between the outside and the inside. No wall of cool air to walk into. It felt like oven heat. My dog, Grace, sauntered in toward my mother hoping to be fed table snacks. She stopped mid-way down the hall and turned to me. I stopped too. I took two back steps onto the front porch and looked to the left, where the AC condenser should have been whirring, and rustling the Rhododendron leaves that surround it. But it was all still.

Panic washed over me. My shoulders tensed up again and whatever sense of normalcy I’d enjoyed vanished in an instant. I went inside, shut the door, and raced down the hall to check the thermostat—96 degrees downstairs. My mother wore her usual outfit: fleece pull-on pants, a fleece half-zip, and a Patagonia down jacket. She’s always been cold but the dementia messes with her senses and exacerbates it. Her face was red all over. Around the edge, her grey hair lay flat and drenched in sweat.

“How long has it been this hot?” I asked, looking at her. That’s how you have to speak to people with dementia. You can’t yell something from behind their backs or to the side. You have to look directly into their faces. 

This wasn’t my first crisis as a caregiver, but it was among the most frightening. What I experienced lay at the intersection of the hard- and human-infrastructure challenges the country faces. Many opponents of President Biden’s economic agenda have scoffed at the very notion that humans, caregivers, can be infrastructure. But without us, the country would grind to a halt. Most of us serve without pay, as the number of people in need swells, the planet heats, and the inanimate infrastructure we all depend on fails. It is a recipe for mass suffering.

My mother answered, “You have to get me out of this sweat,” she said. “It’s all sticking.”

“Give me a minute to see if a fuse has blown,” I said and raced upstairs.

On that floor, the thermostat read 102 degrees. I checked the fuse box—they all lined up. I flipped the switch quickly to see if the system would kick back on. Nothing. I opened my brother’s bedroom door. He had fans blowing while he watched a baseball game. His hair and head looked like he’d taken a swim in the ocean—his favorite pastime.

“How long has it been hot in here,” I demanded. Heat can make elderly people, vulnerable people, drop like rocks. 

“A while,” he said.

“Why didn’t you call me?” I yelled. “Always call me when there’s something wrong.”

I ran back down stairs and out the front door, jumped into my minivan, and blasted the AC, then rushed back inside to my mother.

“Let’s get you out of these clothes,” I said. 

She stood up and I watched to make sure that she was steady. She shuffled on her walker, the tennis balls on its feet collecting black dog hair like a magnet. This daily path she walks from the kitchen to her downstairs bedroom with an attached bathroom that has a walk-in shower is the top reason I live in this rented house. 

I dressed her in a short-sleeved shirt, light cotton pants, and a new Depend. I changed her and placed her soaked winter clothes in a hamper.

“Let’s go sit in the car and cool down,” I said.

She thought that was a great idea, but it took a while, because she has to side-step slowly down stairs. That’s what the kind of dementia she has does to the body; over time, protein clusters in the brain stifle its function, degrading balance and movement. She climbed in and I turned on the radio. I got my dog in the minivan and then my brother.

In the kitchen I dialed the landlord and texted as well. “Emergency. AC is out. Please call someone.” Like everything else about my caregiving life, I knew that I was not alone in this crisis—there were surely hundreds of other people across the state whose air conditioners had failed. 

I made calls to repair places and shoved our lone window unit into a frame in the living room before joining the others in the car.

We drove to Lowe’s. I left the others in the running van and purchased the few window units they had remaining in stock. Back home, my brother sat in the car with my mother and dog while I installed them in her room and throughout the house. I’m small but strong and know that I have to learn how to be handy because no one is going to come to the rescue when things break. After a little while and a quarter tank of gas, I checked the thermostat: 80 degrees then 79.

I brought my mother back inside. My dog, too, and my brother. He shouted that the temperature upstairs was down to 85 now.

“This is much better,” she said, her normal color now restored to her face. I made her a cold tuna salad for dinner. Afterward, she dug into her half-gallon of Brigham’s Mocha Chip Ice Cream.

I showered. I apologized to my brother for yelling. I was grateful that I had a credit card to pay for those AC units. I curled up with my dog, knowing what might have happened had I taken a later boat home or decided to stay another night. And in that moment, I knew that I’d have to do even more as a caregiver going forward. I thought for a minute about taking time away from work and remembered that I don’t have that luxury. Most people, and especially freelance writers, don’t have paid family and medical leave. I knew that if I were to go away again, even for just two-and-a-half days, I couldn’t really be absent. I’d have to check in more or start asking more of my family. It’s a hard thing to do for caregivers, ask for help. 

I turned on the news and listened to stories about the infrastructure deal that would help our crumbling roads, bridges, old pipes, and lack of broadband, and how Republicans in Congress don’t think caregivers are “real infrastructure.” That we’re not critical to the foundation of this country. To them, we’re just some afterthought social program. That sentiment, unmoored from reality,  is especially prominent among those members who are rich, white, older men and women who will never know the struggle of seeking care for a child or an elderly parent. 

But paying people a living wage to care for our loved ones in our homes and communities is a necessity. Providing paid leave is what civilized societies do, and supporting caregivers is how we’re going to survive as a nation with 80 million Baby Boomers entering their golden years, as temperatures break records, and air-conditioners fail. Perhaps the only way that small-minded group could understand these needs is if they experienced being an “afterthought” firsthand, if they knew what a house feels like when it’s 100 degrees in the shade and their elderly parents are inside.

Now multiply my experience by 53 million. That’s how many unpaid family caregivers work in the U.S. Add in paid caregivers and the total number rises to 67 million people—mostly women—doing this essential work. 

There is no functioning society, no economy, no humanity without us.

To all those mothers hiding in an upstairs bathroom just to get a break, grandchildren caring for their grandparents right out of college because it’s the only way to save their family homes, fathers who have to miss work and race their young daughters to emergency rooms, daughters trying to work full-time, and live their lives, while caring for mothers with dementia and siblings with disabilities: We’re the pillars in our families. We’re the bridges to care. We’re the roads that help our children and grandchildren as their life journeys begin, and help our moms and dads and spouses and partners and siblings reach a dignified end. 

We’re lucky to have a president and vice president who are fighting for us and understand this because of their own caregiving experiences. Now we just need the Democratic Congress to act with the urgency of caregivers in crisis, and pass all of these policies. Pick them up like AC units, and shove them into windows like they’re trying to save their own mothers’ lives. This is a plea: Pass them all. Put them in every bill, and vote for those bills, until they are all law. Do it by any legislative means necessary because caregivers like me, we’re crumbling and collapsing out here. We’re still strong, but our predicament is unsustainable, and we need help.