Don’t tell Jessica Conway Church and Shane Eleanor Conway McCoin about your sick cat. They’d probably listen, but you’re better off listening to these two wise sisters. They are the founders of losingapuzzlepiece.com, a website and blog providing resources and stories for young adult and sibling caregivers and grievers that addresses what happens when your sister has cancer.
What one thing do you wish you had more time for? Relaxation. This was especially true when we were in the role of caregiving before our oldest sister passed away. But the need for more relaxation continues in grief, and is always needed for working moms. It isn’t simply finding time or feeling like we deserve to relax. Whenever we do find time, those moments to ourselves are often filled with sadness. We found it impossible to shut off our brains, to prevent our minds from perseverating on the “to do’s” or contemplating a future without our oldest sister. Instead of relaxing, we were grieving in anticipation of, and later in the wake of, our sister’s death.
With what do you wish you had more help? As caregivers, we wished for more professional coordination of care and guidance during transitions between phases of care or medical treatment and palliative care. We felt on our own during what we call the “grey zone,” when our sister wasn’t receiving active treatment but prior to being enrolled in hospice. It was unclear who was in charge of managing symptoms or determining next steps. We just wanted to focus on spending quality time together but, instead, we were often distracted by questioning whether she should continue certain treatments or medications, wondering about the best nutrition plan, and facing decisions about when to start hospice without clear guidelines from medical professionals.
Where do you find support? From our husbands, parents, sisters, and brother-in-law. We are a tight family unit and there are a lot of us, so it’s always good to be together – fun and entertaining – and we are constantly in touch by phone, text, and email. We also have extended family and best friends that have gotten us through a difficult year. Right now, we are finding support from hearing others’ stories about caregiving and grieving.
If you knew then, what you know now…we would stop trying to hold it all together in front of our sister. Sometimes the closest we felt was when we cried together.
…we would take more people up on offers to help but with very clear jobs or requests.
…we would ask for help and support louder and more often from medical professionals and hospice workers.
…we wouldn’t stress about or avoid discussing the big questions or future planning that had to get done.
…we would realize that it’s ok to not feel like the best mother right now or to not feel like going to every social engagement.If we knew then...…we'd take more people up on offers to help but with very clear jobs Click To Tweet
What would you like to see employers do more of to help caregivers? First, we believe that the federal Family Medical Leave Act (FMLA) should be expanded to sibling caregivers. Currently, the FMLA defines family member as a parent, spouse, son or daughter, and excludes siblings unless they have a de facto parent-child relationship. Second, employers could offer understanding and more flexibility where possible. Young caregivers can be at a disadvantage, in particular, because they may still be in school or just starting out in their careers and not have much clout with which to demand flexible schedules or deadlines. Increased awareness about the challenges of caregiving and the variety of the types and ages of caregivers would go a long way towards accommodating their different needs.
What would you like to see medical professionals do more of to support caregivers? There seems to be increasing research and focus on caregiver stress, which is helpful, but not always a corresponding increase in training for family caregivers. We would like to see medical professionals ask “who are your people?”, keeping in mind it may not be the traditional caregivers like parents or children, and then assess their capabilities and tailor training and support accordingly. By asking this, they would focus on the WHO, communicate with those caregiver(s), address their needs, and hopefully make the caregiver stress less of a burden.
Who are your heroines? Our sister, Colleen, was our role model, because she was extremely hard working, made the most of her time, and managed to be good at almost everything. We still don’t know how she accomplished all that she did in her 39 years on this earth. In addition, our Mom is not only a Super Mom, she is also a Super Caregiver. She managed to watch her child decline and somehow kept it together while providing the best kind of love and support that only a mom can provide. There are countless other female figures we love and admire, but we’d love to grab a drink with Michelle Obama, Oprah, and Ellen Degeneres.
What do you admire in/about other caregivers? We admire caregivers that are well rested, cheery, appear showered, and manage to be somewhat fashionable. We could not figure out how to sleep and we would love to have the power to follow the “take care of yourself” advice. Our sleep deprivation led us to only want to wear leggings and start thinking that face wipes were considered a shower. All joking aside, we admire caregivers’ strength to keep going each and every day.
What is your motto? #stoptalkingaboutyoursickcat To explain, we are just beginning to learn about Twitter, but find it hilarious to speak in hashtags. We refer to this one often and it has become a motto. People would compare things like their sick cat to our experience and it was sometimes funny, but also maddening. We learned to turn these comments into humor and it definitely helped us in our “anger phase” of grief.
Caregiving: a blessing or a burden? Blessing. We barely survived but would not have traded the experience for anything. It has made us more empathetic and, hopefully, better sisters and friends. We can relate more deeply to others’ grief or difficult times and want to help them through it.