This is a nice little article detailing some of the stresses of being a young adult caregiver:
Here are some interesting studies that begin to address a few of the issues around caregiving between the ages of 18 and 25:
http://www.ajph.org/cgi/reprint/AJPH.2005.067702v1.pdf
http://www.sciencedaily.com/releases/2008/12/081215074654.htm
And a forum thread related to the topic, perhaps a good site to start seeking/building community support:
https://www.thefamilycaregiver.org/ed/bb/messageview.cfm?catid=4&threadid=126&STARTPAGE=1
Here is a listing for a support group for young caregivers in NYC:
http://www.cancercare.org/get_help/special_progs/caregivers.php
Older women in the office, standing in front of my desk, discussing their mothers’ conditions and all the work it takes to care for them. I was in this sad club, too, though 30 years their junior. I could have screamed, hopped up and down, pounded my fists on the f**ing ground. This is when I met Rage.
I was inaugurated as a caregiver after my mother’s cancer-induced leg amputation when I was 19 years old. At least once a year for several years thereafter I spent nights in the hospital and learned the ins and outs of chemo laboratories. This was hard, and scary, but was not the period where I learned about rage. The rage came later. The rage came because of these experiences, because these experiences and this knowledge went largely unnoticed in the world - particularly in the world of other (older) women caregivers.
When I was about 24 I was working and living in San Francisco. My sister had been home helping with my mom for the better part of the year, so my caregiving had been peripheral (we sort of took turns throughout the years). When my sister left however, and my father was working in Europe, I once again assumed responsibilities. I was working full time so began to make the three-hour trek home every weekend, leaving friday night and returning monday morning for work at 9. It was exhausting, but necessary. Besides, when your loved one is chronically ill, any time you have together outside of treatments feels like a gift. I love remembering those weekends now.
But, as i said, I was introduced to rage during those tiring months. At work other women, much older than me, women in their 40s and 50s, were experiencing their mothers’ illnesses for the first time. Some of them knew that I had been doing this for several years, but they would have these sympathetic conversations right in front of me, completely ignoring my input or my parallel experience, brushing it off as exaggeration on my part. ”She’s so young - how can she possibly know what we’re going through?” And all I could think was, “Your mother has gotten to see you as a grown woman, she has seen your career, your children, your grandchildren - mine most likely will never get to participate in those parts of my life.” And the rage was born and began to grow.
There are fewer of us, so there are few support groups for young women like me and my sister. It’s hard to find anyone who’s had similar experiences, who’s young adult life was shaped by the needs of a parent. There aren’t scholarships for us, there aren’t readily available counseling programs. And older women just refused to respect my experiences as equal to or beyond their own. I could have given these women advice on their situations, I could have guided them through talking to doctors in the hospital, through caring for radiation burns and chemo side effects. But all of this knowledge was invisible.
This is when I learned that Jogging helps with rage. And pillow screaming. I also considered taking up boxing.
A few years later, I have a different kind of rage. I see now the experiences I missed out on because I wanted to be available to my mom. It was a choice on my part, though I couldn’t have lived with myself otherwise, and it’s a choice I’ll never regret as I became closer to my mother through caregiving than ever before. But, my life had practical limitations: as an undergraduate at university I couldn’t take language courses, as they were five days a week and I needed to take classes that only met once or twice a week, as every third week I took my mother to chemo five days in a row, I couldn’t study abroad, I had to choose a major that was malleable and accommodating, I could only take on internships that involved independent research, and I could often only complete cancer-related research projects as that’s the world where I spent most of my time. I’m angry that I couldn’t do these things, that I wasn’t free to move about as I would have liked. This anger is not directed at my mother, but rather at life - that it conspired for this illness and this loss and that this whole debacle in the first place. I’m angry that she’s gone, angry that she’ll never know my children, angry that she couldn’t be at my wedding - angry at a slew of different things. And we, as (former) young caregivers should strive to build a community that acknowledges these struggles.
Rage I think goes hand in hand with caregiving, with illness, and with grief. It’s okay to just shout about it sometimes, to jog it out, to write a nasty blog. But it is, above all, necessary to bleed that poison grief out one way or another.
My mother was (re)diagnosed with cancer just about a month after I turned 19. This is generally a time in one’s life where you begin to realize who it is you’d like to grow into and you begin to develop ever larger dreams and ambitions, all the while maneuvering so as to realize these wants. For me this was the time that I was first called upon to act as a caregiver to one of my parents. This was when for the first of many times I would comfort my mother in her hospital bed and bring her home for further convalescence. We had had a great deal of experience with cancer earlier in my life so I knew that with this announcement most likely a long and arduous trial was ahead. Instead of feeling excitement at the endless possibilities of life stretching before me I was terrified with a new sense of potential loss and disaster.
In the seven years that followed I managed to procure requisite college degrees, but failed to gain any truly meaningful work experience or independent projects. While I struggled to complete my schooling I spent a good deal of time in chemo and radiation labs, doctor’s appointments, and hospital rooms. Of course this also meant that I had a much more intimate and meaningful relationship with my mother than most other young women my age and I was lucky enough to learn not to take for granted a parental relationship that most women do not fully appreciate until much later in life.
So the development of my identity as an adult woman was largely centered around caregiving and what became a mutually dependent relationship with my mother. Following her passing I find that I am not only grieving for the loss of a great friend and a wonderful mother, but I don’t know who I am as an adult woman without her. I never learned who I was outside of the caregiving framework.
Now I’m newly married and living in a beautiful city free to discover who i might be outside of familial needs — but it’s really strange. I’ve gotten used to frameworks of need - of knowing what someone needs from me and acting to fill that need. I don’t know how just be in my own life, to act of my own accord and make life happen for me in the way that I want it. So in many ways I’m only beginning to learn who is my adult self — I’m suspended at the age of 19 learning how to navigate the grown-up world and trying trying to realize my day dreams (and indeed only recently feel like I have enough time and space to know what those dreams might be). But I’m scared that now it’s late in the game. On the other hand - I’ve done things and lived my life in a way that most people don’t experience or aren’t asked to do until they’re much later in life.
It seems to me now that I’m living life backward; developing incongruently to those around me. The years of my early adulthood have left me feeling like a child-crone, made old by loss and grief but still a wide-eyed girl who’s a bit timid and afraid of the outside world. I’ve learned a great deal about life, indeed the very nature of living, but don’t quite know how to live in the world.