Kathryn Burke is a Caregiver. For ten increasingly difficult years, Kathryn (Kate) was caregiver for a parent (not ill, just elderly) and her husband (diagnosed with Lewy Body Dementia with Parkinsons, a very difficult disease to diagnose and treat). The last six years of his life became exceedingly demanding of Kate’s time and energy. Eventually, she was forced to make the painful decision to place her spouse in a nursing home. That decision was heartbreaking, but necessary, and one made under extreme duress. “I didn’t want to give up. I wanted to keep him at home,” she said. But, like so many of her fellow Caregivers, Kathryn ignored her own warnings and fell victim to Caregiver Burnout. Both she and her husband wound up in the hospital.
“Do as I say, not as I did,” Kate advises,” but unfortunately, many of us still follow the same path that she did, waiting almost too long to accept that our own care must come first if we are to care for someone else. “That’s why we need a Care Team, why it’s so important,” she insists. “Your team, and everyone on it, offers support and (hopefully) helps you avoid a Caregiver Crisis that could take you down!”
As her husband continued to decline physically and mentally, he was placed on Hospice, and at the end of his life was transferred to a hospice care center, where he passed away in April 2017. Caring for him at home and finding in-home help, choosing hospice to supervise care, sending him to a nursing home (and continuing to augment their staff with private pay-people), and finally accompanying him to a hospice care center (where she stayed with him until he died)—these were all difficult, sometimes complex, often heartbreaking decisions, as were those associated with holding Medical Power of Attorney.
On the positive side—and there IS always a positive side, facing these circumstances helped to build her Care Team, leading to more 1:1 help. She found a Care Team is fluid, constantly changing to fit specific needs. Caregiving is hard, but it has its rewards, too. Having a Care Team is one of them. Members become friends, and that friendship often transcends the initial Caregiving situation.
Kathryn Burke speaks from the heart and writes from hard experience! In her first book Caregiver’s Journey, Navigating the Path, Kathryn tells her own story and shares accounts of others who are facing similar journeys. Her newest book, released in April 2017, The Caregivers Journey, Building Your Care Team, explains the Caregiver’s role and partnership relationship with your care recipient. It tells you how and where to find help, why you need it, and what your Care Team members can do for you. Kate contrasts home care and facility care, how the Care Teams change, and how to advocate for your Careé in both situations. She also covers Caregiver Coping and Caregiver Burnout and addresses how to cover Caregiving Costs. Most important, she helps you realize the blessings and rewards of being a Caregiver.
Kathryn writes in straight-forward conversational style, laced with anecdotes and analogies. The stories she shares cover a multitude of Caregiving situations from illness to injury. Whenever possible, she shows how to take a positive approach to each experience for yourself and the one you are caring for, your Careé (her own term for ‘loved one’ because, “you might not always love them but you are taking ‘care’ of them”).
A master at multi-tasking, Kathryn has managed to work full time—she is the owner of San Juan Publishing Group—throughout her own Caregiver’s Journey as well as writing books about it and giving presentations on Caregiving. In her spare time—which is seldom and often brief, Kate likes to bury herself in a book, listen to music, play with her flowers, work out, hang with friends in the park, and build things (she swings a mean hammer). Kathryn writes with the inspiration of her cat, FeyFen, who she says is her co-author and BFF.
Most recently, working with the Lewy Body Dementia Association (LBDA) Kate has agreed to form and facilitate the Western Colorado Lewy Body & Dementia Support Group. “If I can help even one person learn to manage this heartbreaking disease, or one medical provider understand and correctly diagnose it, my time and energy for this endeavor will have been well spent,” she says.
Kathryn R Burke is the author of The Caregiver’s Journey, Navigating the Path and The Caregiver’s Journey, Building Your Care Team. (More books, dealing with grief, long-term caregiving, and Lewy Body Disease) are on the way.