Young Adult Caregivers? Anyone out there?

Last month, my young adult caregiver support group meetings came to a close. I had blogged about my initial feelings of attending these meetings here. To be honest, in the beginning, I wasn't sure if it was the right fit. But when the sessions came to a close, I can honestly say I was glad I did it. I still find the private facebook group that I belong to (stomach cancer warriors and caregivers) more helpful and convenient for me, but this was the first time I actually met young people face to face, going through what I was going through.

Attending the young adult caregiver support group represented time that I had to make for myself. It allowed me to cry and express my emotions in front of strangers. It helped me process things that I was holding in that day.

When I first joined the group, it felt a little like an AA meeting...or at least what I imagine AA meetings to be. Everyone sitting in a circle, waiting for their turn to reveal their story. In a addition, it was a bit of a trek getting into the city every Tuesday. There was always traffic. One time, I made the mistake of taking the Lincoln Tunnel and cars moved at a snail's pace. When I finally got into Manhattan, the meeting was already over and I basically had to just turn back around into Jersey. Plus my mom would often give me errands to run of what groceries to buy in Chinatown or things to drop off to my brother. So I'd often get to the meetings either late and/or extremely out of breath.

The good thing was that I was able to express my feelings people in the group also felt and it was extremely cathartic. At the same time, I was one the few people who were actually directly care giving. Some were mainly dealing with the issues of having a parent diagnosed and not directly involved in that person's care. I think this is a really big factor and an important difference. That's why I often am able to connect with spouse's of cancer warriors because we can talk in "cancer language" without missing a beat. It is really a unique distinction.

But a few new people joined later and I even met someone who was caregiving for a parent with the same diagnosis, so I was glad to have made this connection. I think it just really hits home that there are not that many young adult caregivers out there.

Kairol Rosenthal wrote a blog post with some great tips of how to find a support group that's right for you. You can find her blog here. For convenience purposes, I pasted her post below.

September 01, 2011
Do Cancer Support Groups Work For You?


By Kairol Rosenthal

During my stint with cancer, I’ve attended both thyroid cancer and young adult cancer groups.  They ranged from excellent to abysmal.  Here are six tips I’ve come up with for making the most out of a support group experience. I’m curious if you’ve ever tried them:

1. Contact the leader first to see if it’s a good match for you. Ask if participants have a similar disease type or variation as you, what stage of their disease are they in, if the focus is emotional support or swapping practical medical coping strategies. If age, relationship status, race and ethnicity and other personal factors are important to you, ask about the demographics of the group.

2. Try a few meetings. Sometimes groups vary hugely from meeting to meeting depending on who is there and what issues are coming up.  Give it more than one shot.

3. Go out on a limb. If you want to discuss an issue that nobody is talking about, be daring and bring it up yourself.  Many support group participants are often waiting for that one person to talk about the elephant in the room.

4. Find your wonder twin. Sometimes a support group is a great place to meet one person who you really connect with.  It is perfectly fine for you to ditch the support group and continue to meet for one-on-one support with each other over coffee.

5. Chose a format that’s right for you. Telephone, online support groups, social networking groups, one-on-one peer support through matching organizations. People have even told me that reading Everything Changes was their support group.  If one format of support group isn’t right for you, find one that is.

6. Don’t feel guilty or badly if you are not a support group person. The point is to get support if you need it and it doesn’t have to always come from a group.  I personally find better support through my friends who do not have cancer than I do through organized support groups of people my own age living with my disease.  I’m okay with that.

Taking the "Support Group" Plunge

Dealing with cancer is difficult, but dealing with it alone is unthinkable. My mom has her close friends and a few cancer "warriors" who talk to her regularly and provide support. The conversations start off with asking how she's doing and then move on to other topics like family gossip, cooking recipes, stories about life in China ages and ages ago, or current events. It's good to have her mind off something when she's talking to friends. Being at home and feeling unproductive can be depressing. Right now, she keeps calling herself an "invalid"... like "how can I be happy when I'm an invalid." To try and cheer her up, I bought a wig for her, so that hopefully she can feel more normal being in public.

Support is important. For me, I've found online forums and discussion boards not only a great resource, but also a place of comfort. It can be cathartic reading about people's own experiences and feelings that often match yours- fear, anxiety, hope, dread. It's that common bond or that club no one wants to be affiliated with. People starting treatment soon, or just diagnosed. People with advanced disease for x many of years sharing their experience and offering hope. People dealing with horrible or odd side effects and asking for advice. People who just need to vent. Oh, and there's a lot of venting and a lot of cyber hugs and "I feel you" messages. There's also a lot of TMI topics, like about poop, and...well right now, only poop comes to my mind, but you get the idea. What's so great about these online forums is the fact, that for the most part, you're anonymous. You share as much information as you care to. People only know you as "chemo cancer chick" or "grumpy monkey" or just "Rick." I can log on anywhere and find my people. And you get to know the "regulars" in each group- the people that butt heads, the people that are so funny, the people going through this "battle" and being honest without any filter.

Very recently, I decided to join a young caregiver's support group in Manhattan. I thought it might be comforting to find young people like me, going through what I'm going through. I felt it was like a gift to myself because I would literally be spending money to go into the city every week. (Of course, that also means doing grocery shopping for my mom while I'm there). Getting to my first meeting was a mad dash of sorts ...rushing into the city, dropping off food for my brother that my mom had made, dropping off mom's forms for filing a tax return...all before taking the subway to the 5:30pm meeting.

Out of breath and about 15 minutes late, I walked in. I saw a small group of people around a table. I waited and listened as the group moderator finished introducing herself and explaining the "ground rules" for the group. And then we all introduced ourselves. For the first time, I was no longer anonymous. I couldn't hide behind my teddy bear profile pic or my nickname. I looked around the table, all of us looking nervous, preparing to expose ourselves and our relationship with cancer.

I came away from the group with mixed feelings. Perhaps it's because the group is so small and everyone's situation is different. No one in the group is caring for their parent to the extent that I am for my mom. No one had the same disease. Some weren't really involved in their care, mostly because of distance. I know people say that cancer changes people and they have to find their new normal. But that's just it. I'm not normal. Even in a group for young caregivers, people "like me," I felt myself feeling rather different and just a tad bit more alone in this circumstance.

However, I will continue to go to this group because I made a commitment to myself and will keep an open mind. In addition, I found some useful tips from distant caregivers that my brother could apply  since he doesn't live at home. For example, he could call in at the doctor's appointment or participate by "skyping" into the meeting. I doubt the doctor would mind.