TBI Caregiving as an Olympic Sport

If TBI caregiving were considered an Olympic sport, what category might it fall under: a competition? A sprint? A marathon? A team effort?  What qualities would a caregiver need to successfully meet the challenge? Vision, persistence, focus, and endurance would be key, along with the ability to refine techniques, and try over and over and over again until you get the right results.

I’ve met many Olympian caregivers who never give up, who inspire us to try harder, and who encourage others through their own example. While there are no gold medals for these events in life, they make us stronger, more resilient, and able to face life challenges head on or support others meeting a new challenge. So as we caregivers witness athletes poised on podiums with tears of overwhelming gratitude for having attained a personal best, we can smile inwardly and know we have also given our all in a way that has made a difference.

Thirty Minute Challenge

What can you do in thirty minutes?

I’m always talking about how important and beneficial it is for people with TBI to exercise, but it's equally important for caregivers. I don’t listen to my own advice often enough. My daily exercise has degenerated into a leisurely walk once a day. Today, I tried something new: for thirty minutes (when I might have been fooling around on Facebook or reading the paper over coffee), I decided to move as though I had been given 30 minutes to fill up a shopping cart at my favorite store. I was amazed at what I could do in that small amount of time if I planned it out and just did it.

8:00 a.m. - 8:15: a vigorous walk outside while talking to a friend on the phone.

8:15: Turned on morning news and exercised while watching. During commercials, I blazed through housework, vacuumed three rooms and the staircase, and ran through the house collecting stray glasses and garbage bags. While the news was on, I watched while doing jumping jacks, lunges, push ups on the staircase, and yes, a few dance moves! I actually broke a heavy sweat.

In 30 minutes, I caught up with a friend and the news, exercised, and cleaned up the whole downstairs. The best part is, I feel like I accomplished something and did something good for myself.  My challenge is to do this every day, or let’s be real—most days!

What can you do in thirty minutes?

Feeling Connected

Over the weekend, in the scenic Green Mountains, I reconnected with family. There were brothers, sisters, cousins, second cousins, and some relatives I had never met before (over 100 in all).  We played, ate, sang, danced, and toasted our tight Irish clan for two days straight at the kind of family reunion that happens only once every twenty-five years, if that. By the time I left with my little family of four, I felt like a part of something so much bigger than myself—strengthened by those reaffirmed relationships, this bloodline that nothing can sever.

I began to wonder if these connections have any other effect on people besides making us feel warm inside, so I did a little research. It turns out that feeling connected not only makes us feel good, it makes us do good. Read the link below and maybe you’ll be inspired to plan a family reunion sooner rather than later! Go ahead, throw a party--everyone will benefit!

http://greatergood.berkeley.edu/article/item/feeling_connected_makes_us_kind/

Obstacles

It was unusually late last night on our three hour trip home from the beach—the sun was so perfectly warm, the breeze so perfectly light, we stayed on the beach, hesitant to return to the unpacking of beach bags, hanging of damp towels, and closing up of the summer house.

While driving west on I-64 in the left lane, a large truck blocked our vision. Hugh let out an exasperated sigh. We drove like that for several miles, each lost in our own thoughts, our minds migrating to the workweek ahead. Finally, Hugh broke the silence.

“The speed limit is 70,” he said. We were moving along at 50 or 55.

“We won’t get home till after ten.” I felt my shoulders tense.

Hugh found an opening, moved the car into the right lane, and passed the truck.

We both smiled. The road opened up before us, melting into a blue streaked night sky with a crescent moon. Hugh switched on the radio. We both relaxed.

I thought about that truck for a moment; how we let it dampen our mood, make us anxious. It kept us from seeing what lies ahead.

Sometimes we know the obstacles in our lives, and we can work at getting around them, but other times, there’s one big obstacle that we somehow don’t see, it just stands in our way; and until the day we name it, know it, and decided how to dismantle it, we will feel that edginess inside.

Channeling Gandhi

"You must be the change you want to see in the world," said Mahatma Gandhi. A brave man of peace, Gandhi lived his own words. Caregivers do the same. I see caregivers as those who choose not to turn away from the sick, those that stay when many others leave, who don't make excuses about the many "other" important things they have to do. Caregivers show up, and often times, that's all that's needed of a caregiver: to be present, to witness.
I am blown away by many of the caregivers I meet who spend year after year tending loved ones, and most of the time, caregivers will say they receive as much as they give. I know I felt that way. There's something about the giving of your time and attention that creates a universe worth belonging to.
To be the change you want to see in the world sounds like a lofty goal; and yet it really just means living each day fully at peace with the decisions and actions you make moment by moment, and knowing that you make life a little more comfortable and pleasant for others by being here on this earth.

Taking it on the Heart

When Hugh was initially hurt, and for many months after, the outpouring of help and compassion from our family and friends was heartwarming and much appreciated. As month after month passed by, we were still in need, and it became more difficult to accept help without feeling like we were pulling everybody around us down with our endless need for assistance. Feeling like the friend nobody wanted anymore, I pulled back and tried to go it alone, but there were times when I still had to call friends to vent or ask for advice or help, and then I felt like a burden, so I vowed to give back with all my might once things were on an even keel.

This was ten years ago, and I still find myself taking on other people's problems as if they were happening to me. It took two years for Hugh and I to feel like we were on the road to recovery, functioning like a normal couple with our family again, but many other people are not as fortunate as we are, and struggle for years on end. I sometimes find myself taking it on the heart--as if it's not enough to listen, or to help out in simple ways. I admit, I sometimes lie in bed at night thinking about other people's problems as if they are my own.

I wonder if other caregivers struggle with this after accepting help for so long. Life can be hard, and we all want to be good friends to those who need us, but how do you turn down the dial inside you that hurts for others? A dear friend of mine once told me I needed an "empathectomy" because it was unhealthy to be overly empathetic, to feel the pain of others acutely. I think she's right, and yet, I don't want a hardened heart either.

I'd love to hear how others feel about this, and how they help other people while remaining at peace, even joyful, for their own good fortune and health.

Locked-in Syndrome

I'm on a mission to raise awareness about a rare condition called locked-in syndrome. My neighbor, Dan, a 34 year old world class drummer, has been locked in now for two years, due to a brain stem stroke. He has been completely paralyzed except for his eyelids, and cannot speak, yet he hears and understands everything going on around him. I had never heard of the condition before this happened to him, and I recently learned that many people do not survive this kind of stroke, and that 90% of people who are locked-in die within four months. Dan is an amazing guy; he's talented, fun, and full of life. That's why I pledged to donate 5% of the first years profits from my book, Learning by Accident, to Dan's Trust.

In my opinion, Dan is alive today because of his parents, Chris and Tom, the two most incredible caregivers I have ever met. They have given up just about everything to take care of Dan around the clock with very minimal help. When Dan arrived home after a few months from stays in two different hospitals, he had bedsores and no muscle tone. His dad, Tom, an architect, built a standing frame to "get Dan upright" a few hours every couple of days, and his family has worked tirelessly to stretch and strengthen Dan's muscles. They also devised a way to speak to Dan. Dan looks up for "yes" and blinks for "no" and they have an alphabet system to spell words with Dan, but this provides only minimal communication. Chris, Tom, and especially Dan work hard every day with the hope that Dan will speak and live independently again. And he IS making progress, but it's slow, as is the case with all brain injuries. Incredibly, they are not bitter or negative; in fact, their home is full of hope, love, and some of the most amazing food you ever tasted! Dan is a self professed foodie, who watches the food channel and has his mother whip up all kinds of wonderful concoctions. He can only eat pureed food because he cannot chew, and a lot of it comes from their flourishing backyard garden.

If you have any encouraging stories or news about locked-in syndrome, please contact me. To learn more about Dan and to help his family, check out Dan Duggins Trust on Facebook and watch Dan's progress at: Watch Magic Happen on Facebook too.