Our Motivation Behind Losing a Puzzle Piece

We started this website just four months ago, on March 17, 2016. Since then, we have been connected with great people and groups and heard from many different perspectives in caregiving and grief. As we pause to take stock, we realize that we have personally benefited greatly from this website and find it rewarding to maintain. Some have wondered why we are doing this and what our goals are, so in addition to what we explained under “About Puzzle Pieces,” we wanted to open up more about our mission behind this all.

We are aiming to give other young adults and siblings the stories and resources that we were looking for when going through our acute caregiving experience. When faced with the reality that there were no more treatment options for Colleen, we never found stories, humor, and resources focused on siblings going through such a sad and difficult time. We aren’t doing this as a “tell all” for us. We were quite anxious about sharing our story, opening up personally, and drawing attention to ourselves, but felt that our mission to help other young adults and siblings faced with similar challenges trumped these fears. In the darkest times, we didn’t feel that we could relate to other peers who were blissfully planning their lives. We simply want others to not feel isolated like we did. Young caregivers and siblings are amazing and deserve attention in these areas of caregiving and grieving.

We also want to share not just our experience, but advice and perspectives from others by featuring guest bloggers. And we are learning from them, too, as we continue to navigate our grief. So far, we have learned about a mother's perspective on watching her children become caregivers and seeing that they can provide comfort, great care, and respite to the main caregivers. We have learned that music can begin the healing process, that accepting death is necessary to face reality and learn to live with it, that telling the truth about your relationship with your sibling and remembering the hard parts can help you acknowledge their life and fully grieve, and that patients experience the stages of grief as well. We have also heard from experts about how ambiguous loss may affect young caregivers and how to talk to children about serious illness or death.

You may think that we have a team of writers and interns but, unfortunately, it is just the two of us, scrambling to keep up with the self-imposed Thursday deadlines while ignoring the growing mounds of laundry and weeds in the yard, the dinners that just won’t make themselves, and the dogs and children that demand walks and attention. Although this endeavor may be costing us in some ways, it is paying us in connections, motivation, and knowledge. We aren't generating any money from this site and we have no sponsors supporting us, but that's not why we are doing this anyways. The websites, organizations, or products on our Resources page or in blog posts about comforting products and how to help a friend are included only because they truly made a difference to us or we wish we had found them sooner. In addition, we are so grateful to Working Daughter for interviewing us, to Henry Ford Health System for listing our website on their new family caregiver resources webpage under young adult and end of life resources, to our high school alumnae newsletter, the Marian Monitor, for highlighting our website, and to JAMA for publishing our perspective on hospice care, all of which have done so free of charge and free of compensation, but helped us reach an even larger audience.

It’s not about the money, money, money....
— Jessie J Lyrics to "Price Tag"

Our motivation for this website and this community has always been Colleen. She accomplished a great deal in her 39 years while also battling cancer. Every day, she motivates us to try harder, keep going, and make the most of our 24 hours in the day. The least we could do is be even half as ambitious and brave as she was and highlight areas that we feel are in need of attention and support. Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them.

We have learned a few things the hard way in these past few years. We learned that some problems in life are too big to solve. Even sisters can’t fix problems like cancer. It has been difficult to come to terms with, but sometimes the best thing that we can do for a sibling is not to try to fix it all but learn to just be present. We were forced to learn to “just be” with Colleen, to support her, to love her and that was all she needed in the end. If we made stickers like the the popular Keep Calm campaign, ours would say, “Keep Calm and Be Sisters.”

Image courtesy of  www.keepcalm-o-matic.co.uk

Image courtesy of www.keepcalm-o-matic.co.uk