Life After Caregiving

All the things I shouldn’t say about the devastatingly lonely aftermath of grief

Photo by Matt Botsford on Unsplash

My caregiver journey began after college graduation when my mother and grandmother were diagnosed with terminal illnesses. As the only child and grandchild, I become their sole and full-time caregivers. My entire life was put on hold since there was no one else to help. From the first emergency room admission to goodbyes in the ICU three years later, I was thrown into ruin; in many ways, all our lives were over.

This is something I’m supposed to keep to myself.

Caregiving for a sick relative is an indescribable experience. There aren’t words to encompass the nix of optimism, goodwill, and, underneath it all, hopelessness. This person isn’t getting better. They’re going to die and you’re just maintaining them until their body shuts down. It’s as depressing as it is arduous, but I wasn’t supposed to be sad or angry.

I’m not allowed to be sad or angry now, almost three years later. Life is tough. I must learn to adapt.

I’m tired of being so strong all the time.

My mother battled heart failure, COPD, and diabetes, and my grandmother had Lewy body dementia. Watching my mother deteriorate was the most heartbreaking experience of my life. In less than a year, she’d lost her mobility, and was constantly in and out of the hospital for her ailments. As for my grandmother, she could be hostile before, but dementia brought it to a whole new level. She threatened to call the cops on me and would have sundown episodes— extreme episodes of confusion and erratic behavior in dementia patients at night—that would put us all in danger. Once she drove over a median in horrible traffic. A car narrowly missed us. If it’d hit our car, I would have been crushed. It took ages to get her into assisted living.

I shouldn’t talk about this. It’s family business that should stay in the family. But it’s hard to hold that belief when I dealt with all this alone.

Where was everybody else? Enjoying their lives, no doubt, and still doing so to this day, leaving me to drown in grief. There are times it’s totally overwhelming, more so now that I’m completely alone. I’m still cooking and cleaning and garnering medical appointments, but just for me. How do I live like this after taking care of others for so long? I should be “over it” by now, but I’m no closer to healing than I was in 2020.

People stop checking in after the first few months. There were no funerals, so the timeline is blurry. In fact, the last three years have been nothing more than an extended fever dream. There are days when my depression is so intense, it feels tangible, clusters of malignancies occupying my lungs and gut, days where suicide isn’t a concept, but a friend patting my hand, reassuring me. It seems ludicrous— processing death with even more death—but knowing there’s a way out is comforting on the days it’s too much.

According to some of the family, I can’t say that. I’m choosing to be sad, and could get over it if I tried hard enough because “everyone goes through loss.”

I want help, but cannot ask for it. It’s pathetic, shameful at my age to want someone to come over, help me clean, make me a warm meal and hold me while saying, “It’s okay to cry.”

I was doing these things for myself the day after my mom was gone. I was shocked to learn that it’s customary to receive meals during illness or after a loss. Most of my meals at the hospital were hodge podge snacks grabbed from Walgreens, bags of McDonald’s takeout I ate and paid for alone at night. The day after my mother died, I got a pizza from Little Caesars. Two, actually, and I ate most of both. The day after that, I made chicken nuggets and fries, and drank most of my calories in sugary sodas. My dietary habits took a turn for the worse, which has continued to this day.

All I got were comments about how I’m “getting fat.”

I want to say, What’s it to you? So what if I put on some weight? I don’t want to cook a healthy meal. Who cares? Certainly not me. The grief is hard enough; processing a caregiver’s journey and burnout is a slick icing on the cake served to me that no one else wants. I will eat because there’s no other choice.

I’m tired all the time. There aren’t words for how exhausted I am. The fatigue has crawled between my bones, achy and strained as an old wood floor. I never received grief counseling. Therapy is too expensive as it is. I’m lucky enough to have a good support system in my best friends, but they live far away. It’s just me and the cat in my house.

I don’t know what I’m going to do. My mother was initially given a prognosis of five to ten years, but passed away after two. I have no plans and no prospects. I need help—a lot of it. But I’m a grownup, and expected to figure this out on my own.

Cleaning the house is overwhelming. Paying bills drains me for the day. Looking for a full-time job is the last thing I want to do. It all feels so monotonous after such great loss. I spent years in a cycle of uncertainty, sleeping on hospital floors and comforting dying women who couldn’t be mollified.

People tell me that it’ll be okay, but it was never going to be. Caregiving only ends one of two ways: with a nursing home or a tombstone. The latter follows the former. This was the expected outcome, yet I was still unprepared.

I feel like it’s my fault, and I’ve been told as much, according to a few people. It’s my fault they got worse, and my fault that they died. To those who feel this way: if it makes you feel better, sometimes I wish it was me instead.

What life do I have at this point anyway? Most days, it’s a miracle if I get out of bed before noon. It’s been almost three years. I should get it together soon, if not now.

There are days the dishes grow mold in the basin of my sink. Laundry sits in smelly mounds; dusty sheets stay on my bed for months. My house is a mess; this is a grieving person’s home. I don’t care if the floors are vacuumed, or whether the toilet is scrubbed daily. Underneath my actions, or lack thereof, is melancholia and disinterest, a deeply hurting person who will be haunted for the rest of their life.

What no one tells you about life after caregiving: when it’s all over, and your parents are gone, you’re alone. But you need someone to take care of you all the same. A few months, preferably a few years, you need to forfeit adulthood in lieu of comfort, and someone else needs to come do the heavy lifting. Write checks for your bills, cook you warm, buttery meals, make sure you drink water and shower regularly, tuck you into a clean bed every single night.

But of course, I never had any of that. Condolence cards stopped after a week. My grief is unimportant to everyone but me. No one else can hold such a burden without getting hurt. And the hardest truth of all is that I’m angry. I’m angry and depressed and don’t care about much anymore. I haven’t dressed up in three years. I don’t wear makeup anymore. I’ve let myself rot to the point that brushing my teeth is a rarity.

Here is the most open secret:

My life is ruined.

I’m almost thirty years old with no parents, siblings, or close family. I haven’t worked in many years because I quit my job to be a caregiver. The employment gap will make me further unemployable, save for retail or food service work. The trauma of watching my mother take her last breaths keeps me up at night, and knowing there are people who think I’m to blame makes me sick, because on some level, I suspect they’re right. There’s more I could have done, but I was just far too young for the responsibility placed on me.

I’ve fallen so behind in life, I will likely never catch up.

I don’t think it’s right to feel that way. My mom and grandmother are the ones who died. I should be thankful for my life. Instead, I’m throwing it away. Caregiving should be approached with altruism and grace, but I’m angry and sad. I should be thankful for the time I had, yet I mourn all the years robbed from me. Most of all, and most regrettably, I’m resentful of my lot in life. I was there from diagnosis to hospice.

What’s a caregiver to do when their patients die? It’s a secret that nobody will tell me.

Anastasia Jill (they/them) is a queer writer living in Central Florida. They have been nominated for Best American Short Stories, The Pushcart Prize, and several other honors. Their work has been featured or is upcoming with Poets.org, Sundog Lit, Flash Fiction Online, Contemporary Verse 2, Broken Pencil, and more.