young caregivers talk about what it's like

Two nights ago, I sat around a table with eight others, all at least 25 years my senior, discussing caregiving.

Death, disease, aging, disability, caregiving—these had touched every single one of us. But I was slow to realize how caregiving has touched my present life (besides, obviously, the work I do here).

And then it hit me. Almost every one I know is a caregiver, or a caregiver-to-be.

The kind of care I see might be very different than the kind of care you associate with “caregiving.” After all, I’m talking about young caregivers who are 18 to 28 year olds and living in New York City. But if you heard a little about their lives and daily struggles, there is no doubt that they are caregivers in their own right.

A close friend of mine returned to New Jersey yesterday to care for both her parents—her dad is dealing with a heart condition and her mom is recovering from surgery for a broken ankle. My friend became a caregiver within a week. And somehow she has handled this rapid role change with tremendous grace.

Another friend found out her dad had a heart attack a week before she was scheduled for a visit home to California. He is, thankfully, recovering but is still facing difficulties. Meanwhile his daughter worries about him from across the country.

And yet another friend has grown up with a parent with Asperger’s, feeling like from a very young age that she had to take care of the dad who was supposed to be taking care of her.

Two friends are on the “frontlines” of caregiving, living with and caring for their grandparents.

One young woman is caring for her mother who has cancer, and several friends have recently lost, or are in the process of losing, their fathers to the same disease.

Another has a brother with a mental illness that drove him to suicide attempts.

And then, of course, there are the friends who are caring for each other, in little and enormous ways, through diabetes, depression, gender dysphoria, substance abuse, and eating disorders.

Not to mention that almost all of the friends mentioned above have grandparents, parents, or siblings with alcoholism and/or addiction. My friends themselves are in recovery but their relatives are often still in the throes of the disease. (If you have known anyone who has struggled with addiction, you know that it’s a whole different caregiving ballgame…)

So what’s different about my generation as caregivers?

Very little.

We are long distance caregivers. We are live-in caregivers. We are caring for loved ones (and not-so-loved-ones, as is the case for those of us with abusive parents, grandparents, siblings or partners). We have family and friends who die suddenly and those whose deaths are painful and prolonged. We stay up all night with worry and we go to work or school in the morning. We call, we text, we drive, we fly. We isolate. We sink into depression. We resent the ones we care for and still we feel they are leaving us too quickly. Frustrations and fears are taken out on us. The tablecloth is pulled out suddenly and the glasses shatter on the floor. And the whole time we are striving to figure out our direction in life, to do our best, to not engage in unhealthy behaviors.

We are young caregivers in our twenties.

I’m holding back tears as I write. Because for every friend I can identify as a caregiver, there are four more who suddenly come to mind.

And to think: we are the lucky ones.

We are lucky enough be in a community that values service and unity. We show up on each other’s doorsteps with movies and burritos. We call each other. We ask, “And how are you?”

We will not let you do this alone.

I can’t imagine that every twenty-something feels this rooted, especially in times of upheaval. But there is a special thing about my generation that makes us different from older ones — we have the knee-jerk “Google it” reaction.

So I ask you to pause before you judge our generation as a bunch of Internet-addicts. Consider that we too know the pain of caregiving. The utter devastation of loss. The trials of recovery. And we are rapidly developing the online communities we need to get us through this kind of pain. We might be young, but that doesn’t mean we aren’t caregivers. We’re just young caregivers.

Share your experience, please. We need it. We are caring for parents who only recently stopped caring for us. But don’t underestimate our process, even if it looks different from yours. Keep an open mind to what you might learn from my generation.

We may not be fifty years wise, but we are definitely growing up.


This post is dedicated to all of my friends,

my loves,

my dearests,

who might not see their own

courage and grace,

just for showing up,

for walking through today—

but I do.

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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15 Comments

  1. My 25 year old son has been my caregiver for 3 years. Before that when he was 15 he helped me take care of my mother who had brain cancer for a year. My rock my love but hell yes feel guilty. He should be out enjoying his life not taking care of his 55 yr old mom.

    Reply
    • My Mom feels the same way about me but it is something inside of us Caregivers, especially ones to our family members that we feel or I feel that it is owed to my Mom. She never asked for her illness, she never turned her back on me as a child when I became ill, or when I needed help. It’s a commitment us children have for our parents. It is a struggle and emotional roller coaster and if other family members would help it would make things easier. BUT, no matter what at the end of the day, when I put my Mom in bed and tell her I Love Her, I know I made the right decision to care for her. Your son I am sure feels the same way. We Love Our Mom’s

      Reply
  2. My 25 year old son has been my caregiver for 3 years. Before that when he was 15 he helped me take care of my mother who had brain cancer for a year. My rock my love but hell yes feel guilty. He should be out enjoying his life not taking care of his 55 yr old mom.

    Reply
    • My Mom feels the same way about me but it is something inside of us Caregivers, especially ones to our family members that we feel or I feel that it is owed to my Mom. She never asked for her illness, she never turned her back on me as a child when I became ill, or when I needed help. It’s a commitment us children have for our parents. It is a struggle and emotional roller coaster and if other family members would help it would make things easier. BUT, no matter what at the end of the day, when I put my Mom in bed and tell her I Love Her, I know I made the right decision to care for her. Your son I am sure feels the same way. We Love Our Mom’s

      Reply
  3. I am 27 years old. At age 24 my grandmother passed away and I took on a new role within the family. My mother moved in with my grandfather to take care of him. And due to her schedule i stepped in to take care of the times she couldnt. At first it was just dedicating my days off to him and hanging out. But as he became more dependant my role took a whole new meaning. He became completely immobile about 7 months ago. And as that change occurred so did my role. Then 3 months ago my mom who was his main caregiver also became immobile with a knee injury. So now my role even changed more. I am working 40 hrs a week at work and coming home and working till the minute I go to bed. I am now taking care of 2 immobile adults. Thank goodness I have some additional support to help!

    Reply
  4. Great post. I became a caregiver at 28, I’ve been doing it now for 11 yrs.

    Reply
  5. Thanks for the great article. In my 20s I cared for an elderly aunt, in my 30s a frail mother-in-law, in my 40s for numerous friends who died as a result of HIV/AIDS, in my 50s for my mother (cancer) in my 60s for my father (ageing issues). Now 67 and you have reminded me that caring is a life-long experience. Thanks.

    Reply
  6. Thank you so much Donna– your feedback is always appreciated. I am so glad you and your family are supported and supportive. “If we have loving relationships, we give care. It’s that simple.” <– Brilliant. It really IS that simple.

    Reply
  7. At 58, I feel too young to be a caregiver; I cannot imagine it in my 20s. But I know that my experience of caregiving is very different from that of the generation above me because I grew up a feminist. How has that change continued?

    Reply
    • Interesting question… I feel I only know a pixel of the big picture. Gender, for my generation, seems to play less of a role in determining caregivers than it does for the older generations.

      Reply
  8. This is a great post. I became a caregiver (officially) at 32 and ten years later I still only have one friend who has started being a caregiver. Its tough!

    Reply
    • Thanks Joy! It truly is…

      Reply
  9. Allie, I would NEVER judge you or anyone else who is 10, 20, 30 or 40 years younger than me. My daughter is 21 and she gives and receives care every day. Nicholas’ caregivers (who are also his friends) are all 20-something. The last time one of them took a day off working with Nicholas, it was because he was with his own mother in hospital when she had emergency surgery. If we have loving relationships, we give care. It’s that simple. Thank you for a truthful and touching post. I will share it widely! xo

    Reply
  10. Allie:

    Excellent, brave and honest post. I relate, began caregiving at a very early age. I salute the the young caregivers of your generation and know what it takes out of you and that you learn about sacrifice far too soon. Blessings

    Reply
    • Thank you Laura. Your words are so appreciated.

      Reply

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