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.

 

Feb. 16, 2017 Caregiving and Grief News Roundup

February is National Cancer Prevention Month and we have come across many touching stories. These brothers are raising awareness by sharing their story - TODAY weekend anchor Craig Melvin’s brother faces stage 4 colon cancer at the young-age of 39. Unfortunately, doctors report a growing trend of early onset cases, so it is important to get screenings. 

Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

Photo credit Keep Calm-o-matic http://www.keepcalm-o-matic.co.uk/

We are well aware that we mention our favorite card maker, Emily McDowell, often, but we just love everything she does and says. Her book is now out, so go order it! She was featured on NPR  and shares her wisdom on providing sympathy. She says to not worry so much about saying the right thing, because that is impossible, but instead focus on just being there and listening. Instead of allowing someone to be angry or sad…. "there is this internal pressure to come with a silver lining… [but] that feels like your pain, which is very real, is being minimized.” We completely agree.

This powerful story from the Elephant Journal reminds us that honesty is important when someone is dying. 

Zach Sobiech who died of osteosarcoma is missed by his loving family and his sister, Grace, shares her college essay, inspired by him. She worries about remembering him, but now realizes that she carries a bit of him with her. Very touching essay.

http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

http://www.childrenscancer.org/main/latest/he_will_never_let_me_forget/

Here are a few other links from around the web that we wanted to share.

Do you have an inspirational or helpful news story to share? We would love to hear from you!