You have spent over a decade supporting caregivers and elders through your writing. How did you come to find this purpose?
I spent nearly twenty years caring for a total of seven elders. This was during a time when family caregivers were hardly acknowledged at all and there was little support. In the last of my elder care years, I felt the need to write about my experiences and that of other caregivers I had met during my 15 years of daily visits to a local nursing home, where various loved ones had gradually moved.
The result was my book, Minding Our Elders: Caregivers Share Their Personal Stories. Shortly after the book was published, I was encouraged to begin a column on caregiving for the newspaper where I worked as a librarian. The column is now in its 13th year and is published in a large percentage of the 120 newspapers owned by this media company. This all evolved into writing for some major websites. I write as the Candid Caregiver for HealthCentral.com and have written extensively for Agingcare.com for whom I also moderated a forum for over a decade. Additionally, I moderate a forum for Dr. Leslie Kernisan’s Better Health While Aging, though that forum is private.
As you can see, my mission to share my experience with other caregivers through one book evolved into sharing my experience and encouragement through many other venues.
During these years of writing about caregiving, I’ve learned from my readers as well as professional agencies, so my work is always evolving. Having said that, my mission will always be to share my experience in a way that helps those who need to connect with someone who understands what they are going through. Elder caregiving entails untold exhaustion and pain, as well as lifelong rewards but it’s something that needs to be lived through in order to completely grasp what it all means.
What are the biggest challenges people face as they grow older?
Loneliness has been proven to be detrimental to health. Many elders feel lonely even if they have plenty of people around. Some of this is just life—they have likely survived many of their friends and often their spouse. Some of it is that, in our culture, the aged are either invisible or viewed as a negative drain, with their vast experience in life routinely overlooked.
Other challenges include:
- Lack of affordable services in the home
- Transportation for those who want to remain active, but for whom driving is no longer an option
- Struggle to maintain independence
- Loss of dignity because of society’s negative views toward aging
What about challenges for those caring for elders?
Emotional and physical exhaustion: Providing care for older family members often means witnessing their decline firsthand. Additionally, they often have seemingly unending medical appointments of various types that require frequent outings that are hard on the elder, as well as multiple medications that must be carefully managed.
Financial stress: Caregivers frequently must cut back on work or even quit their jobs in order to care for sick relatives. This not only hurts them financially in real time, it diminishes their own hopes for retirement and lowers the amount that they would eventually receive through Social Security. So, whether taking on debt to stay home with a family member or receiving lower Social Security payments after retirement age, many of us will pay for our caregiving though financial loss for the rest of our lives.
What’s your best advice to elders and their caregivers?
For the elders:
Assign a Power of Attorney for your health care as well as your financial interest now! Doing so will not hasten the time of your demise. What it does is protect your interests as well as make your family’s life less of a nightmare should you become physically or cognitively impaired.
Talk often and openly to your family about your views on aging and how you want your life to go as the years pass. Since we can’t see the future, your family can’t make promises, but if they know your preferences, you will all win. They will have a foundation on which they can build your care when the time comes that you need their help.
Do not tell them to promise that they will never put you in a nursing home. Forcing such a promise will put them through hell should the time come that nursing home care is the best option for your safety.
Stay connected socially in a way that pleases you. That will keep you healthier and lessen the pressure on your family to continually entertain you.
For the caregiver:
Put yourself in their place. Aging brings losses. Fortunate people are also tuned into the gains that come with experience but, especially within an ageist society such as ours, the losses will eventually dominate. Therefore, before people leap in and want to take over every aspect of their parents’ lives, they need to stop and say, “How would I feel?”
Dignity is often more important than safety. Yes, we need to do what we can to keep our older adults safe, but don’t sacrifice their dignity in the process.
Don’t overlook the history and context that your elders embrace. When they are gone, they will no longer be able to tell you about their history—and even much of yours. So, listen to what is new in that often-repeated story. You may even learn something.
How does your writing shine a light on the situation?
Because of my years of caring for multiple elders, each of whom had different aging experiences, I’ve been able to relate through storytelling how I managed to help usher my loved ones through their last years. Since I’ve personally experienced some version of what many others are dealing with, they relate to me as one of them. This camaraderie is part of what makes people feel that they can communicate with me.
I don’t judge caregivers because of choices they make, though when advice is sought, I try to give it with the caveat that each situation is different. Additionally, I’m also a strong proponent for elder dignity, and most people want that for their elders even if they haven’t thought along those lines. I try to help them understand an elder’s need for autonomy while freely admitting that I made mistakes while trying to find my way along this murky path.
What resources do you recommend?
We live in a time with many exceptional resources; these are some of my favorites:
www.aging.gov was a long time in coming but it came to fruition about five years ago. Once you type in the zip code of the person needing care, you are led to a long list of local resources. Here you should be able to find information on The National Family Caregiver Support Program as well as scores of other resources.
Connect with Carol Bradley Bursack
Contact Form: https://mindingourelders.com/contact
Book: Minding Our Elders: Caregivers Share Their Personal Stories
Facebook Page: www.facebook.com/mindingourelders
Carol Bradley Bursack spent more than two decades as the primary caregiver for a combination of seven elders. The result was a book titled Minding Our Elders: Caregivers Share Their Personal Stories as well as a long-running newspaper column of the same name. She also 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 and her website since 2006, has contributed to a number of books on dementia caregiving, and is currently working on her second solo caregiving book.