Unexpected Caregiver Writes Encouraging Guide

Unexpected Caregiver Writes Encouraging Guide

Health Thoroughfare Q&A with Donna O’Donnell Figurski

Donna O’Donnell Figurski wears many hats – wife, mother, grandmother, teacher, playwright, actor, director, picture book reviewer, jewelry crafter, photographer, author. But her most critical accomplishment in recent years is being a caregiver to her husband, David, after he survived three brain surgeries in 2005. David’s traumatic brain injury left her clueless about what to do after such a tragedy occurred, and she was forced to dig in and learn how to manage both of their lives in the disability lane. This became the inspiration behind her book, “Prisoners without Bars: A Caregiver’s Tale.”

Many people don’t think about the role of caregivers until they are personally thrust into that position. What would you like the public to know about the lives of caregivers?

As you stated, most folks never think about being a caregiver until they become one. When one dons a caregiver hat, it’s as though he or she has been tossed into the deep end of the pool with no life preserver. That’s exactly what happened to me.

I constantly treaded water to keep afloat–I paddled faster and faster as my duties and responsibilities grew in response to the many needs of my husband, David. Imagine poking out of the water only a nose gasping for breath and eyes filled with fear. That would be me at the beginning of my caregiving journey.

Caregiving is an overwhelming and non-ending task that for many is a 24-hour, 7-day-a-week job, most often with no pay. When David had his brain injury, I went into automatic mode. I think we all have a caregiving gene. In prehistoric days, mamas cared for their children, husband, and elders while papas hunted for food and provided safety for their families. Our environment has changed, and so have our social norms, but in the end, we all have the ability to care and take care of each other.

The care-recipient is the “star” of the show, while the caregiver is the “supporting actor.” The star relies on the supporting actor to make him or her shine. In short, as a friend of mine recently said, “Caregivers are the unsung heroes.”

There are millions of caregivers around the world, but many, like you, didn’t expect to sign up for the role or have past experience to rely on. What tools and resources were the most helpful to you when learning the skills necessary to look after your husband and his health during his journey to recovery?

According to a study in 2009 by the National Alliance for Caregiving with AARP, there are about 65 million caregivers in the United States. The study results included children from the age of 8 years old. In 2005, I unexpectedly became a member of that exclusive club when my husband David had a traumatic brain injury. His three brain surgeries within two weeks to repair a subarachnoid hemorrhage, an aneurysm, and an arterial venous malformation (AVM)–none of which he was expected to survive–gave me a lifetime membership into the caregiver club.

I didn’t have access to much help at the time of David’s brain injury. I was simply learning on my own in “Caregiving 101,” which I was designing minute by minute. Many years later, I discovered social media–Facebook, in particular; and since joining a ton of groups for both survivors and caregivers of brain injury, I have met hundreds–even thousands–of folks who are in the same caregiving boat as I am. Many of those folks, though we’ve never met in person, have become close virtual friends. A huge bonus of joining the social-media groups is that I am fortunate to also meet folks in person, and I have developed a reality friendship with them. I highly recommend that folks who find themselves in a caregiver role, look to Facebook for support-groups. There is a group for just about anything. Join several until you find a good fit for you and your needs.

Whether they realize it or not, caregivers are truly heroes. But even heroes need a break every once in a while. Do you have any self-care advice for caregivers?

On my radio show, “Another Fork in the Road” (broadcast live and archived to be a podcast on the Brain Injury Radio Network on blogtalkradio.com), I often talk with my guests or panelists about self-care for caregivers. Self-care is crucial for the caregiver’s well-being. I often remind my listeners of what airline attendants say on every flight: “In the event of a decrease in cabin pressure, affix your oxygen mask first; then assist others.” It makes perfect sense. You must take care of yourself before you can lend help to others. If you are worn out and exhausted, you won’t have anything left to give to your care-recipient.

I realize that many folks reading this will think yeah, right! That would have been my response exactly in the early years of my caring for David. There didn’t seem to be two seconds to rub together, let alone time for me to do something for me. But, after I put David to bed at 8:30 pm with the baby monitor on, I sat down at my keyboard and started to type out “updates” of David’s progress (or lack of) and sent them to family and friends. Without realizing it, I was fulfilling a need in me, to write, while keeping David’s supporters informed.

Not many will find writing a relief from their daily ministrations. It’s hard work. But, there are many ways caregivers can grab a few minutes of isolation, quiet, and ME time. Perhaps when the care-recipient is napping, a caregiver can grab a “cuppa” tea, read a chapter in a book, soak in a bubble bath with a vanilla candle burning and with a soft light, call a special friend, take a walk around the block, or do whatever works for him or her. The dishes piling in the sink or the loads of laundry on the floor can wait. They’ll get done eventually. ME time for the caregiver can allow for a whole new perspective to take over. It will help to refresh, reboot, and revitalize the caregiver, which will ultimately benefit the care-recipient too.

Why is it important for caregivers to seek out support for themselves?

Burnout! Burnout! Burnout! That’s what will happen if caregivers don’t seek help for themselves. It’s almost inevitable. It’s difficult to juggle all of the challenges life throws out. Struggling to get through each day, week, month, year is hard enough, but when someone is responsible for another’s well-being, it doubles the burden of life.

Support-groups on social media can be very helpful, but for more immediate and local assistance, ask family and friends for help. It’s not always easy to reach out for help. Many times, people would like to help, but they just don’t know how. Ask for something in particular: “Can you take David to his therapy session today?”; “Would you mind picking up a quart of milk and a loaf of bread when you go to the grocery store?” (Don’t forget to ask for a chocolate bar too); or “Do you mind folding the laundry?” Easy tasks for a family or friend. They might seem like a mountain to an overburdened caregiver. Remember, caregivers NEED to care for themselves first.

What does the title of your book, “Prisoners Without Bars,” refer to?

The book went through an evolution of titles, starting with the most mundane: Surviving Traumatic Brain Injury to Conquering Traumatic Brain Injury, which was a little stronger but still boring. It eventually morphed into Prisoner without Bars: Conquering Traumatic Brain Injury. I originally intended it to be David’s story of how he fought to survive three brain surgeries though he was given little chance to live. But, after a literary agent, who was interested in the manuscript, read and discussed it with me, she insisted that the title should be Prisoners (with an s) and pronounced it to be about me–the caregiver. Though I vehemently disagreed, I came to realize that it was about caregiving. My thoughts, explanations, feelings, and blatant emotions are splattered on every page of the book. The title aptly became Prisoners without Bars: A Caregiver’s Tale.

But why Prisoners without Bars? That’s easy! David and I were both in a jail-like situation within our own lives because of David’s brain injury. David was a prisoner of his own body, which betrayed him and limited his life in so many ways. I became a prisoner of David’s injury because I chose to walk this brain-injury maze with him, looking after his every need.

If you could go back in time and give yourself one piece of advice before your husband’s brain injury happened, what would you say?

Seriously, only one piece of advice! If I could change time, I would be sure that David did not do the 13th chin-up that was the catalyst for his brain injury.

But really, the advice I wish I had followed and would offer to others is know your financials, know how to pay the bills, know how to get car repairs done, know how to get the air conditioner and heater cleaned yearly. The list goes on and on, and, though the list is endless, it all falls under “be a grown-up.” Be responsible! Be independent!

David and I were each responsible for our jobs outside the house. I was a 1st or 3rd grade teacher (depending on the year), and David was a professor at Columbia University. We shared our home responsibilities and ran our house together. I took care of cooking, cleaning, running errands, doctors and dental appointments, and the kids’ extracurricular activities, while David did the duties I listed above, the laundry, and more. The thing that caused me the most anxiety beside David’s dire health situation was not knowing how to run David’s part of the house duties. I literally was unable to get money from the ATM because I refused to use it and wouldn’t memorize the PIN number. Not smart! When David was in a coma or speechless because of a trache, I was penniless and had to rely on friends. Again, I say, not smart. So, my sage advice is to not have your head in the sand like I did and to know how to run your household. I hope you won’t need to use this advice, but you will be glad you were prepared if you do.

Donna O’Donnell Figurski hopes the “misadventure” with her husband, David, in the brain-injury maze helps others who may unsuspectingly walk this path someday. For more, please visit https://www.donnafigurski.com/.


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