Talking Sibling Caregivers

Caregiving has been on our minds lately. A recent article on caregiving and new efforts to provide respite, training, and other help to caregivers gives us hope. It provides examples of caregiving training methods, such as in-home coaches, and explains the need to support family caregivers. We related to this quote from a provider and caregiver: “‘I'm a physician, and when I take care of my mom, I have an endless loop in my head,’ of the to-do list.”

We recently attended a symposium focused on family-centered care through the end of life sponsored by Henry Ford Health System . We spoke at the conference about our experience as sibling caregivers, caring for our sister, Colleen, who died of cancer.

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We took this opportunity to talk about young adult and sibling caregivers, in particular. We explained that we think siblings make amazing caregivers because siblings know each other the best, have a long history, and may feel most comfortable being their true self with each other. While young sibling caregivers face the same challenges as all caregivers - stress, difficulties with sleeping and focus, juggling demands - they also have unique challenges as young adult caregivers - isolation from peers, lack of workplace flexibility and financial stability, and sometimes child rearing. And in addition to all of that stress, they lack status or recognition as important members of the caregiving team, since they are somewhat unusual as caregivers and aren’t thought as as “typical” caregivers. Most people picture the parent or the spouse acting as the caregiver, and assume adult siblings have moved on once they have moved out of their nuclear family home, and maybe started their own families. There are a few things that we found rare and that contributed to our feelings of isolation and unimportance- lack of receiving direct information about what was happening with Colleen and having to rely on her or our parents to convey it, ineligibility for Family and Medical Leave Act, or FMLA, coverage, and lack of many stories and reports about sibling caregivers.

During the symposium, we met many people who validated our feelings and who were grateful to us for sharing our story. One nurse told us to remember that this is our story, our perspective, and no one can change that or take it from us- those words still stick with us. We spoke to people who told us they related to our story because when one of their siblings was ill, they also rushed to be by their side. They also felt marginalized in caregiving and in grief. We also heard from providers who agreed that siblings aren’t thought of as typical caregivers. In addition, we heard from other types of caregivers who echoed some of our feelings. For example, they spoke of the “blessing” of caregiving and that they wanted more sensitivity in discussions of options at the end of life. They wanted more training. We met a medical professional who didn’t want the hospice team to know her background and wanted to be trained in caregiving like any other member of the public. We loved this point that she made and agree that no one should make assumptions about family caregivers’ abilities and training needs.

We felt uplifted by stories of others’ caregiving experiences, especially their dedication to their loved ones, and validated by common sources of frustration. We never thought that we would have this “new hobby” of reading and researching about death and dying, or that we would feel so at home at a symposium on end-of-life care, but we are glad to find community in our new reality.

 

The Story of the Past Year

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

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"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." - Our Motivation Behind Losing a Puzzle Piece
"In many ways, losing our sister helped us find more meaning in family and appreciating life - and isn’t that a big part of the holiday spirit?" - Simplify and Downsize: Surviving the Holidays Without the Same Cheer
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"#stoptalkingaboutyoursickcat #doyouwanttoaskaboutme #publiccryingismythingnow" - Sister Humor About Our Grief
Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

Photo credit: Melissa Kroll Photography www.melissakrollphotography.com

"After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings."- Maggie Gets It: A Place Like Home

We have learned a great deal, not just by examining our own feelings and searching for insight, but also from our fabulous guest bloggers. We heard a mother’s perspective on sibling caregivers, a patient talk about grief and how acceptance is the hardest stage, and various views on sibling loss from a Marine's family dealing with his sudden death and how music heals, from a sister accepting and reflecting on the whole sibling relationship, from a group of siblings who supported each other through loss, from a sibling dealing with an unexpected loss and realizing life will never be the same, and the lessons a sibling learned through death. We received advice on how to talk to children about serious illness, how to keep going through grief, how Colleen was essential in her friend’s life, and other topics such as ambiguous loss, survivorship, and architecture's role in caring for cancer patients. We are so grateful for their wisdom.

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.