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.
Here is a list of things that have helped me through the past year:
1. Puffs Plus tissues (seriously prevent nasal chaffing)
2. Gardening - tending to, caring for something, getting outside, being distracted but also having a space to think if you want it
3. Pets - also get you outside, distract you, comfort you, snuggle you when you’re more sad than you’ve every imagined
4. Melatonin - helps me sleep. I take one little melatonin and half an hour later I can sleep. After my mom’s passing, before I started taking this, I wouldn’t be able to sleep for hours and would usually wind up bawling as memories and thoughts of my mother and life with her flooded my brain. This started again following the first anniversary of her death.
5. Counseling!!! I don’t have this anymore, as I’ve relocated to France with my husband and don’t yet have health care here. But I was in counseling leading up to my mother’s death and for eight months afterward. Just having a safe space to be sad, without causing anyone else to bear a burden, is an amazing help. Not to mention profound psychological insight and advice about self-care . . . If you can’t afford a private provider there are many grief support groups and even free counseling often offered by hospitals and hospice
6. Websites - www.theatreofthemind.com — it can be a little cheesy and new-agey but since I don’t have therapy anymore, and things have been rough since the anniversary of my mother’s death, this website has helpful podcasts that address grief and depression. Truly they helped pull me out of one of the deepest depressions I’ve ever experienced.
7. Books. Two books have been really helpful: Motherless Daughters by Hope Edelman addresses the specific grief of a daughter who’s lost her mother. It was really really helpful, particularly in the first 6 months of my grief. The author has collected a good deal of stories and accounts of other women who have lost their mothers and so helps you to feel included in a community, eases your feeling of isolation in grief and assures you that what you’re going through isn’t completely unique (though of course, everyone’s grief is their own in some way). It doesn’t however provide steps for recovery, so to help me with this - particularly after the first year - I turned to the book Grieving Mindfully by grief counselor Sameet M. Kumar. This book relies on the practice of mindful meditation to calm anxiety and depression, helping you to live in the moment and cope in a healthy way. I honestly haven’t yet implemented a meditation practice, but even just reading about it, the way that Kumar explains grief processes, has been very helpful. Particularly as he acknowledges that a part of grief is understanding who you are now - mourning not only the loss of your loved one, but the version of you that had that loved one - that grief is a process of identity change, not just loss. This was the first time I felt that that was really recognized by anyone, as I’m still struggling to know who I am now, post-mama. After a year, I still don’t know.
8. Exercise - I started jogging after my mom died and that felt like the greatest release/relief of anything. I felt like I was out-running the manacles of sorrow, could feel them breaking with each lap. Getting outside, getting moving - these are very important things to do whether you are actively grieving (so sad you feel like you’ve been punched in the stomach) or more passively (that acute sorrow is packed away somewhere beneath the surface). It helps your body feel alive, helps you feel a part of the world again, not to mention all the physiological benefits. Yoga, is also helpful- calming anxiety, helping you be within yourself, finding a space that is perhaps not as inhabited by the grief.
9. Nature - for me being in nature is the most calming, comforting space.
10. Cleaning - it’s important that you continue to take care of yourself and your space even in the most painful throws of grief. Cleaning is also something you can do to keep busy, not to distract yourself from the grief, just to prevent you from being swallowed by it. You’ve got to continue to take care of yourself, even when things are at their hardest. Now honestly, I think I spent two weeks on the couch after my mother’s funeral (when all the visitors are gone and all the hubbub dies down) and I spent a good 4 days on the couch a few weeks ago around the anniversary of her death. Each time I got myself going again by cleaning, taking care of things around the house, of myself. Really, you’ll feel better, more in ownership of yourself again.
if you have any other suggestions for coping - please let me know!
I haven’t dreamt this much about my mom since last year - after she died i dreamt about her nearly every other night. Perhaps it’s the melatonin I’ve been taking to sleep at night.
This time it was after she had chemo. She was finished up and healthy again and her hair was beginning to grow out. We had picked up old books from her classroom (she was a second grade teacher for over 20 years) and socialized with some of her former colleagues (most of whom I haven’t heard a word from since her death). She was smiling so much - it was beautiful. We drove home, laughing and talking and I realized that no one made me feel as good about myself as my mom did. Discussing my future, she told me that I could do anything, highlighted my abilities for me. When we got home we played with one of my brother’s children, talking to my brother, smiling at each other, at the child, watching her play with some playing cards.
It was as simple as that, and waking up I was so sad to leave her presence. Since her death, I haven’t felt as good as I felt in that dream. My life has been fine since losing her - I got married, have been living in Paris, trying on different different occupational hats. But nothing has felt as right as sitting in the kitchen with my mother. Because everything I’ve done since losing her has been without her.
But a dream like this, is a blessing. Although it reminds me of my loss, being in her dream presence is is a relief and a gift - to be able to re-experience, even fleetingly, our relationship is amazing and a little respite from the grief.