Tonight's picture was taken in June of 2009. Three months before Mattie died. That day we were visiting friends in Alexandria, VA. Their backyard was fenced and we brought Mattie outside to play. In classic Mattie style, he used the big fly catcher (which actually was a gag gift given to all the kids at Mattie's 7th birthday party) to swat at the bubbles blowing his way. I won't forget that moment in time, nor Mattie's heightened stress and anxiety. I never moved very far from Mattie, because I never knew when things were going to turn emotionally for the worse. Happy moments were actually fleeting.
Quote of the day: Rare caregivers may need more support from the doctors and care professionals they interact with. Fewer than half (48%) have had a doctor, nurse, or social worker ask what was needed to provide care to the recipient, and just one in four have had these discussions about their own care needs. ~ National Alliance for Caregiving
I came across a report (which you can find below) entitled, Rare Disease Caregiving in America. The report was written by the National Alliance for Caregiving, which is a wonderful non-profit based in my neck of the woods. I remember using many of their reports in graduate school, and their studies helped me craft my dissertation. I believe this organization conducts meaningful and solid studies, that truly shed light on the stresses of family caregivers.
But what caught my attention about this report were the words.... rare disease. As many as 30 million Americans have one of the 7,000 known rare diseases. This is defined as a health condition affecting fewer than 300,000 people nationwide. In my advocacy community, we all identify childhood cancer as a rare disease, since around 16,000 children are diagnosed a year. This study however seems to focus upon diseases which are genetic in nature, and clearly childhood cancer is not inherited. Therefore it doesn't make the list. Yet despite that, the findings from this study are VERY applicable to parents caring for a child with cancer.
In their study, 62% of rare caregivers (their terminology, not mine) are providing care to a child under the age of 18, with the majority of these children being their own. The study collected data from 1,406 adult caregivers, and here are some highlights of what was found......
- 74% of caregivers struggled with a sense of loss for what their care recipient’s life could have been and fewer than half felt their role had a positive impact on their family (44%).
- Rare caregivers reported that providing care to their care recipient was emotionally stressful (67%), twice as high as that of general caregivers.
- Four in ten reported having fair or poor emotional or mental health (41%).
- Around 30% rated their physical health as fair or poor, and 58% found it difficult to take care of their own health.
- Rare caregivers may need more support from the doctors and care professionals they interact with. Fewer than half (48%) have had a doctor, nurse, or social worker ask what was needed to provide care to the recipient, and just one in four have had these discussions about their own care needs.
- Rare caregiving can ultimately impact the finances of the rare caregiver and their family unit, and these financial impacts loom large. Half of rare caregivers face high levels of financial strain (51%) and three out of four worry about the ability of their own family to pay for care.
- Nearly all rare caregivers have experienced financial hardship because of their caregiving role (86%).
- About half of rare caregivers have difficulty maintaining friendships (51%) and 53% report feeling alone.
Back in 2003, when I defended my dissertation, my focus was on caregivers of older family members. I had the privilege of talking to over 100 caregivers for my study and to this day, I can recall the stresses some of these individuals were under. So much so that I wondered how on earth they were functioning at work! But I was also very aware of the fact that they were in this role for the long term. A role they freely chose in most cases and as such, they were hesitant to even refer to themselves as caregivers. Sometimes talking about their role in this way, made them feel badly or guilty. In essence they deemed it as complaining but of course that wasn't what they were actually doing. There is a difference between needing support and complaining.
Do I think there are commonalities among all family caregivers (exhaustion, isolation, financial hardship, etc)? Absolutely! Whether caring for an adult or a child with an illness or special need we share and experience the world in similar ways. Yet with that said, I would say that people in our society are not accustomed to seeing children who are ill. It scares them and the natural way of dealing with fear, is shutting the problem or issue out! I experienced this greatly with Mattie's cancer diagnosis and most definitely with his death. Friends did not know how to interact with me and therefore didn't! I lost many close friends (people I knew for 15+ years) because of childhood cancer and I would have to say like any caregiver the ramifications of the role we play remains with us always. Time goes by, but we don't forget the vital role we served.
Rare disease caregiving in America
https://www.caregiving.org/wp-content/uploads/2018/02/NAC-RareDiseaseReport_February-2018_WEB.pdf
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