According to the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute, approximately 17 percent of Americans care for an adult. According to the same sources, a caregiver’s health appears to deteriorate over time and as burdens rise. Staying positive is perhaps the hardest challenge of a caregiver, especially over time.
There is no one more equipped to tell us how to do that than veteran caregiver Carol Bradley Bursack.
She has spent more than two decades caring for a total of seven elders. This experience provided her with her foundation upon which she built her reputation as a columnist, author, and consultant. Carol is as passionate about supporting caregivers work through the diverse challenges in their often-confusing role as she is about preserving the dignity of the person needing care.
“Throughout the years, I felt pulled toward sharing my story with others because at the time caregivers were nearly invisible to the broader world,” she told me. “Caregiving of varying sorts has defined my life and still does, so passing on what I’ve learned is a natural progression.”
The wisdom in her writing extends beyond caregiving. It can be applied to any situation, especially dealing with depression, anxiety, or a chronic illness. She teaches us how to approach life with a bit more flexibility, forgiveness, and compassion.
Therese: You’ve written on how to avoid burnout as a caregiver. What would you say are the most practical steps to take to stay committed and positive as a caregiver?
Don’t think of self-care as a luxury because it’s not, it’s a necessity. It’s best to start early which likely means setting boundaries, but if you haven’t done so you need to start where you are and move forward with determination toward self-care. Don’t make self-care into another job. My self-care has generally consisted of taking time for meditation and to read inspiring spiritual material as well as literary novels. Others may need to take a morning run or meet regularly with friends or a caregiver support group. The idea is that you do something to replenish your own spirit so that you can continue to give to others.
This type of attention to my needs, small as they may seem to some, helps me stay positive and able to carry out the next steps in front of me. That, in turn, keeps me from burning out.
Therese: You write beautifully about managing uncomfortable moments as a caregiver with someone with dementia. Could you provide some quick advice on that?
Carol: As you know, my dad had brain surgery that left him with severe dementia. Through that experience, I learned these truths.
Remember who they were. This person is the same person as before dementia symptoms appeared, so don’t lose sight of them as a unique human with specific wants and needs. Remember their history, as well, so that you don’t fall into the trap of patronizing them. My dad was my dad and dementia didn’t change that. He still deserved the respect that he did before his surgery and subsequent dementia. Nothing — absolutely nothing — changes that. Put yourself in their place, which means trying to understand what it is to be confused and fearful about what is happening around you. Think about what you’d need to feel safe and grounded, and try to deliver that. Never argue because their reality is a true to them as yours is to you.
Therese: Personally, your journey inspires me. What are the sources of energy or inspiration you lean in order to persevere? Do you have any favorite quotes to share?
Carol: My faith is what keeps me going. I remind myself that I’m doing all that I can do with what I have at my disposal so if I continue with that, and I stay open to new ways of viewing life, I can leave the rest with God.
With those statements in mind, I’ll offer three quotes with my own comment on how the relate to me as a caregiver:
“There is a crack in everything, that’s how the light gets in” – Leonard Cohen, “Anthem”
There is no such thing as a perfect caregiver. If we learn from our mistakes and grow with life, we are doing enough.
“We never see others. Instead we see only aspects of ourselves that fall over them. Shadows. Projections. Our Associations.” – Carl Jung
Make certain the care that you’re providing is as close to the wishes of that person as possible. This is about them, not you.
“Aging is an extraordinary process whereby you become the person always should have been.” David Bowie
When we take these words to heart, it is easier to respect the years that this human being for whom we are providing care has lived.
Therese: Even though I’m not a caregiver (except to my kids right now), I glean so much from your writing that I can apply to my life. What would you say are the three top life lessons of caregiving that you can apply to others?
Self-care is necessary if you are to complete the full caregiving marathon. Treat the person for whom you are caring as an individual worthy of ongoing respect undiminished as a person by age and/or dementia. Understand that preserving the dignity of the person for whom you are caring means that you might have to allow them to take risks. Even when dementia is present, respecting their dignity demands that caregivers provide choices and accept the results of those choices.
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