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Article

It Started with Joe: A Journey into Caregiving

By Carol Bradley Bursack

When my neighbor, Joe, was in his 80s his wife died. He’d battled Meniere’s disease since his 30s and as a result was completely deaf. Joe’s only adult child lived across the country so he was alone. How could I not help? My children were then young. Over time, we grew to love Joe, but going in I had no way of knowing that he would become my charge for over five years. Still, I don’t see that I could have done things differently. After Joe’s death, my own elders started tumbling right into my caregiver’s arms. First, my childless aunt and uncle moved to our community to be close to family. Before long, my uncle started having strokes and my aunt died of cancer. Meanwhile, my in-laws’ as well as my parents’ health began to crash. At one time, I was running between care-settings six or seven hours a day, six days a week and a few hours on Sundays even when I did have some backup. I never thought about the fact that this could go on for two decades. My example echoes that of many. We go into caregiving – usually gradually – thinking of the short term. For most people, caregiving lasts much longer than anticipated. I now know that I should have taken better care of myself from the start. I hope, through my work with caregivers, that I can help them do what I didn’t do. I hope to help them learn the importance of self-care. During the mid to later years of caregiving, I wrote Minding Our Elders: Caregivers Share Their Personal Stories, though the “Epilogue” was written after my last three elders died. For years, I combined freelance writing with caregiving, but eventually I had to return to the “real” work force even though I still had three elders who needed me and an ill son. We do what we must. I learned, on-the-fly, the skills needed in the modern world – mostly technical. Eventually, through my job as librarian/news researcher at a newspaper, I was able to write an elder care column, also titled “Minding Our Elders.”  Now, “Minding Our Elders” is a full-service writing business. The book Minding Our Elder’s is a portable support group. As the name implies, I am a strong advocate for caregivers, but also elder dignity. Grieving begins when adult children begin to see their parents’ decline. They need support through the whole process. My book brings that support to the caregiver. Three in the morning and you can’t call a friend? No problem. The storytellers in the book understand. Read one story. Read two. Feel the comfort and support of others who have gotten through this. Tomorrow is another day. Through my book, I offer emotional support. Through my newspaper column, I give practical advice and resources. Through all of my work – my blog, column, caregiver’s forum, speaking, and my role as writer and forum moderator for major caregiving websites – I offer support from the caregiving trenches. My website and blog bring it all together. Find them at www.mindingourelders.com and http://www.mindingoureldersblogs.com The responses that I’ve received from readers have been humbling and gratifying. The reward of knowing that my elders’ suffering, particularly that of my dad who had dementia and inspired my first book, makes me aware that this is a team effort between those for whom I’ve provided care and my own dedication to carry on their legacy while I attempt to help others navigate their caregiving journey. Carol Bradley Bursack spent more than two decades as the primary caregiver for a combination of seven elders and is the author of Minding Our Elders: Caregivers Share Their Personal Stories. She is also a long-time newspaper columnist. Carol writes articles and blog posts for major websites and consults with website owners and managers to help them better understand what kind of support caregivers need. She has been hosting her blog at www.mindingoureldersblogs.com and her website at www.mindingourelders.com since 2006. Carol has contributed to a number of books on dementia caregiving and is currently working on her second caregiving book.

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Radio Show

Radio Show

Living with Myasthenia Gravis

June 5

eCareDiary spoke to Laurna Robertson, author of renowned blog, "365 Days of Myasthenia Gravis" about her journey from diagnosis to medication to diet and her tips on creating a support system.

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