A Day in the Life of a Caregiver

I sleep in fits, thinking I hear the floor creaking from my mom walking around. I sleep in the basement, which has its own heating zone so I can drop the temperature down to 60 for prime sleeping conditions. Upstairs, the thermostat is set at 75, the carpeted floor and wood paneling contain 40 years of human filth and cigarettes, and it genuinely feels like someone hasn’t opened a window since 1984. Not that the basement is much improved; I try not to think about the massive amount of mold that has taken up residence comfortably down there. What’s that saying? Six of one, half a dozen of the other.  

Or maybe it was the anxious dream that jolted me out of my precious sleep—the one in which I came upstairs and found that somehow my 75-pound mom with late-stage emphysema has pulled down the rickety attic folding stairs, climbed up there and brought down all the Christmas decorations. In her typical stubborn fashion, she didn’t want to bother me with one more thing, Doing the task behind my back is somehow better in her mind, even though it leaves her completely breathless. 

Regardless of what wakes me in the night, I toss and turn, looking at the clock at 2:30am, 4am, 6:30. By 7:30am, I just get up and go upstairs. I peek at my mom, whose chest is moving up and down ever so slowly. She is sleeping in anawkward position, slumped in a near-sitting position in the bed with her arms raised above her head, and New Jersey 101.5 playing at a brain-boiling volume through the night. We’ve tried all the positions for her—the living room chair, pillows supporting her in bed. Despite the look, she somehow truly sleeps like the dead—essentially good practice for what’s to come. 

I plop on the unbearably uncomfortable 1980s dark floral print couch in the living room waiting for my mom’s first coughs, signs she is waking up. I read e-mails, do my Spanish lessons, check the weather, scroll Instagram, all the while, try really hard not to infuriated by the radio station announcer who seems to be spreading conspiracy theories. 

I hear my mom cough, which means she is waking up. She slowly makes her way 12 steps from her bed to the living room armchair. Sometimes she stops at the bathroom, but not always. As usual, she is gasping for air as soon as she gets out of bed. I have readied her nebulizer and hand it to her to do that treatment immediately. Then I go make her a cup of instant coffee (her choice). After finishing her nebulizer treatment, she is still breathless. She puffs on her rescue inhalers. The amount of steroids going into this woman’s petite body is insane. I take her pulse ox and heart rate, 92 and 79, respectively, normal for her. I give her a dose of morphine to slow her respiratory rate. 

Within 30 minutes, she is breathing normal—well, as normal as she can breathe. She puts in her hearing aids and puts on her glasses, and says good morning to me. Then she talks. Endlessly. It is the only time the tv and radio is off in this house, but she fills the silence. She says she wakes up thinking about so many things. Usually it’s nonsense in her cognitively declining mind. She probably asks me once a week if I have checked the gas level in her car. What I want to say is, “Seriously, mom??? Do you really think I’ve been here for 3 months driving around and not filling up gas in the car?” Instead I grit my teeth and say, “yes mom, I have checked and filled the car with gas.” Or maybe she’ll ask if she ever told me where she keeps the checking account information, as if I haven’t been managing her accounts for 3 months now. Or maybe she’ll ask if she ever told me the story about where the red velvet drapes in her room came from. Every day is a new weird topic. 

After she talks, she gets these important thoughts off her chest, she says about 15 minutes of prayers. Then she gets up to make another cup of coffee, but usually also steps outside to smoke a cigarette. She makes the proclamation, “I’m going to go do my thing, and try to do more damage to my body so we can move things along.” I don’t stop her, or comment. There is no point. When she comes back inside from smoking, she says she couldn’t inhale fully, but she got her fix. 

The hospice nurse calls to give me a heads up of what time she’ll be there for the weekly visit. The visit is less than 30 minutes, but always leaves me with peace of mind. I’m not an alarmist at all, but I like the reassurance that we are making the best choices given the circumstances. “Your mom is an anomaly,” the nurse always says. “I know she doesn’t want to live, but there is no indication she is dying.” I laugh awkwardly, then rattle off the list of meds/supplies for her to order. 

From 9:30am until noon, my Bible-loving mom watches the judge shows. I can’t stand this trashy TV, so I tend to hide downstairs into my hole in the basement. It’s an opportunity to get on my laptop and feel normal by getting some work done. I don’t have any steady work or projects at this time. Instead, maybe I’m doing research for an article pitch (a pitch is truly like a mini article in itself). Or maybe I’m actually working on an article assignment. Maybe I’m sending out pitches to libraries for our virtual programs. Maybe I’m just writing depressing blog posts like this one. While I sit downstairs, I hear the floor creaking every 20 minutes or so—my mom going back and forth for coffee and cigarettes. 

Around 12, I go upstairs to check on her. It’s time for her next nebulizer treatment, and she likely needs some other medicine—morphine to slow her respiratory rate, robutussin to clear the tickle from phlegm, or lorazepam for the shakiness she gets. The news is on TV at this point, so I listen for the weather forecast. After the news, her judge shows come back on. 

Around 1pm, Justin calls from Alaska. He listens to me drone on complaints about my mom and my life here that I need to get off my chest. He usually finds something funny to say that makes me smile and laugh for the first time in the day. 

In the afternoon, I find a household project to do. Another shelf in the closet or drawer in the dresser to go through. I find everything from my elementary school homework completed in 1986 to nearly empty beauty products from Avon & Artistry that have been untouched for years.

At some point in my day, I go to the gym, which restores my sanity and releases my endorphins. Maybe it’s for a Zumba class or maybe I’m lifting weights. If it’s nice outside, I take a 2-mile neighborhood walk. My childhood neighborhood is old—with our tiny hovel being build in the late 1950s, renovated in the 1980s, and never enlarged beyond its 700 square feet. On my walk, I pass through the many subdivisions that span through the decades. There’s the bigger two-story fancy houses that my sister and I witnessed going up in the late 1980s. Just 1/2 mile down the road, there’s a new subdivision that desecrated any remaining swathe of woods for the deer to make room for 100+ mansions. Their pricetag of $800,000 seems inconceivable as there isn’t even a grocery store on this side of town.

At 3pm, I sink into the uncomfortable couch again to spend some time with my mom. It’s almost time for her next round of meds, and this hour brings the Kelly Clarkson show, which my mom loves. Honestly, I enjoy it as well. My mom talks pretty much the entire show. She says she doesn’t know who the guest is, or she tells me about how Kelly has moved to NYC this year. It is all nonsense, but I listen. Because I know she is bored and lonely. When the show wraps up at 4pm, I tell my mom it’s time for her nebulizer treatment. She says, “Already? I thought I just did it.” I say, “you did it 4 hours ago.” 

If she doesn’t need anything else, I go back downstairs, since the hours from 4-7pm are filled with depressing news blaring from the TV. My sister calls on her way home from work to get the official “DUM,” or daily update on mom. She usually texts me during the day, so has some idea on how things are. I give her the full play-by-play on the phone. It is therapeutic for me. She listens with sympathy. We both lament about something about mom, maybe how she is losing her marbles more and more or how absurdit seems that she is still walking and talking. 

Around 6:45pm, I come back upstairs. I heat up mediocre store-bought soups for my mom & I. I don’t do any elaborate cooking in my mom’s tiny kitchen. Her knives are dull, her spices are decades old and I am just plain lazy. She only has top teeth and can’t really chew anything, plus she is at choking risk with all the phlegm buildup. And not for nothing, but my mom has sustained on processed foods her entire 78 years, so I’m starting to think the headlines are all wrong and this crap is actually not going to kill you. Or maybe it’s the instant coffee and cigarettes that are keeping her alive. 

As we eat, we watch Jeopardy every night. My mom says “I didn’t know that” to nearly every answer. Thank goodness for the closed captioning on the TV because otherwise I wouldn’t catch anything. I like trying to answer the jeopardy trivia. My brain is happy for the exercise. I finish my bowl of soup within 15 minutes—which is a stretch—while my mom takes a good 45 minutes to eat a meager portion. 

We watch Wheel of Fortune at 7:30pm. I don’t really like Wheel as much as Jeopardy, but somehow, my mom’s broken brain is actually decent at it. I sit and watch TV with her until 10pm. Sometimes there are shows I enjoy, like Chicago Med and Chicago Fire. Other times, I am counting down the minutes until I can retreat to the basement, I check one more time if she needs meds (she usually does). She will stay up until 1am watching TV. As I am reading in bed, I hear the floorboards creaking as she goes back and forth to smoke.