It's About Quality of Life, Not Quantity

“I should have taken advantage of my sister coming in on Sunday afternoons,” says Carol Bradley Bursack. “But I didn’t.” She chose instead to do other caregiver chores while her parents were in good hands. Carol is referring to a time in her life when she was the primary caregiver for her disabled son and five elderly adults—her parents, her aunt and uncle, and Joe, the deaf widower next door.

“I didn’t take care of myself,” Carol acknowledges today. “I have a strong spiritual life that got me through a lot, but...” But now she understands the importance of caregivers caring for themselves as well as for their loved ones.

Carol no longer is a primary caregiver, but she’s still busy as ever focusing on the art and science of caring for the elderly (including issues of dementia). Living in North Dakota, she writes a weekly column for Fargo’s daily Forum and its 30 sister newspapers. She also posts a daily blog on her website, Minding Our Elders, and on the popular sites HealthCentral and AgingCare.com, all while tweeting and sharing on Facebook.

A decade ago, she published a book titled Minding Our Elders: Caregivers Share Their Personal Stories. Its purpose, she indicates, is to “offer a portable support group. The stories are honest looks at many different situations with a common thread: that caregiving is hard work, and—at least in hindsight—personally rewarding. The stories give comfort and assure people that they are not alone.”

Carol ranks among the most active advisors I’ve found online. Her advice is sound, filled with common sense that’s grounded in her personal experiences. "My mission today,” she says, “is to break the isolation of caregivers and seniors and give them a voice."

Here’s a sampling of her recent posts: “Evidence of Dementia Is Clear to Neighbor but Adult Children Are in Denial”; “Recovering from the Guilt of Placing a Loved One in a Home”; “A Deserved Vacation from Caregiving Should Be Guilt Free”; “Needs of ‘Elder Orphans’ Is a Growing Concern in an Aging Population”; “Tips to Help Elders Give Up Driving.”

Two decades ago, when my wife Martha was diagnosed with Alzheimer’s at the too early age of 50, I came across a handful of helpful books but few if any advisors online; the internet was in its infancy.

Carol’s father suffered from dementia, though not Alzheimer’s. It resulted from surgery meant to correct a brain injury sustained years earlier in WWII. While caring for him, Carol says she stumbled onto a practice now called “validation.” Her father could talk, but his view of reality was different from most others. “I tried to get into Dad’s head, to connect with where he was. If Dad wanted to obtain an elephant for the zoo, what did it hurt to give him what he wanted?”

At the time, such practice was frowned on by professionals, she says. But today, “it suddenly has become the way to treat people with dementia.”

            Carol's father              Clarence "Brad" Bradley

            Carol's father              Clarence "Brad" Bradley

A common mistake Carol sees among caregivers is “being so overly involved that you can’t see the bigger picture. Some caregivers feel that if a loved one dies, they’ve done something wrong. They feel that death is ‘losing.’”

“I’m a strong believer in quality of life over quantity.”

Another mistake she often sees is an overreaction by adult children. “It’s a good idea that they are watching, but some can become heavy-handed out of fear for their parents or they don’t want to be bothered with worrying about their parents.

“We are NOT our parents’ parents no matter how disabled they become. There is a legacy to their lives that needs to be respected. I get scared that caregiving in the wrong hands can become disrespectful and counter-productive.”

Carol closes off our conversation with these tips for caregivers:

  1. Protect your most important role—you are the advocate for your loved one. When possible, give tasks to others so that you don’t become overburdened.
  2. Learn how to take care of yourself without feeling guilty.
  3. Resources and the availability of knowledge are much better today for caregivers. Search for what’s out there, and use it.  
  4. Finally … learn to detach yourself from your loved ones’ problems. “How do you do that?” I ask. With a lot of practice, she says. Counselors and spiritual mentors can be invaluable. You must understand what you can fix and what you cannot fix.  

Thank you, Carol.

~~~~~~~~~~~~~~~

On another front: If you’d like for me to share my family’s story personally with your book club, church group, Alzheimer’s or aging organization, feel free to contact me by email: carlen@carlenmaddux.com. I’ll try my best to meet your request.

I recently shared with my townhome’s book club here in St. Petersburg and with the Westminster Palms assisted living community. I’m scheduled to talk in early April at St. Peter’s (Episcopal) Cathedral; also at a Lecture Series this July in Montreat, NC, where Martha spent her summers growing up, as did our children; and in early May to the Tennessee Alzheimer’s organization in Knoxville.

Thanks,
Carlen Maddux
www.carlenmaddux.com
carlen@carlenmaddux.com

P.S. Feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

P.P.S. You can click here to check out my book A Path Revealed: How Love, Hope, and Joy Found Us Deep in a Maze Called Alzheimer’s.