Thanksgiving-Not for Sale

Thanksgiving is my favorite holiday because it’s centered on gratitude and the sharing of traditional family food. There are no presents required, just presence. Everything from the crackling fire, the swirling aroma of pumpkin, cinnamon, nutmeg and apples, to the rush of setting the table with autumn colors and candles feels more peaceful than other holidays, maybe because there is no pressure to buy a gift—the gift is the gathering.

I've seen on the news that several big box stores are opening on Thanksgiving with doorbuster sales ahead of Black Friday! I find it sad that people will be pulled away from their family tables to work a register or stock shelves for throngs of deal seekers. Somehow, this elevates consumerism to an absurd new high. With a world twisting in turmoil, wars going on, people out of work, and many people struggling with disability, is it really necessary to focus on the next best wireless device or designer outfit? Is there not one day we can reflect on what we already have and find it sufficient? I plan to do that, and I'm glad to learn that many of my friends and family feel the same way. 

I remember well how fortunate I felt the first Thanksgiving following Hugh's accident, and then how fortunate I felt to still have my parents with us, though gravely ill, for yet another year. As caregivers, Thanksgiving can truly be a day devoted to those family members who need us most, who rarely get out, and who often feel lonely. It is a sacred opportunity in this fast-paced world to enjoy a stretched out dinner and dessert with the people we love most. Some people may want to rush through their meal and stand in line for a big screen TV. I'll be relaxing at home. Pass the pumpkin pie!

IGS - Irritable Gratitude Syndrome

Do you suffer from IGS: Irritable Gratitude Syndrome? That’s when you find yourself saying, “Sure, I’m thankful that I have my health, but I wish I had this or that," or "I’d be really happy if I could only….”

I suffer this disorder from time to time. Hurricane Sandy smacked some sense into me this week. Not only do I have my health, but my family is healthy—at least at the moment. I  have a roof over my head, food in a fridge that has power, heat to warm me on a cold night, and steady income to pay the bills. I should be bouncing off the walls in jubilation. I am rich beyond measure. This is my thank-you note to the universe.

IGS is a common affliction. It’s natural to think the grass is greener on the other side. Lately, though, it’s clear that misery is also on the other side: unexpected, tragic misery that can strike any of us at any time.

Sandy has made boring, everyday life, exotic beyond measure. 

How Healthy are You?

Do you define yourself strongly by one thing or another? If you define yourself in terms of your health, do you focus too strongly on what’s not right with you and fail to see all the strong, healthy systems in your own body?

I’m talking about how we see ourselves: failing or thriving, fit or weak, capable or incapable; and what labels we use for ourselves: I’m a diabetic, a TBI survivor, an asthmatic. One of the qualities I have come to admire most about my husband is his refusal to be defined by his TBI.  He sees it as something that happened, he dealt with it, and it’s over. He doesn’t make it who he is. He doesn’t blame every problem he has on it, and he never really brings it up.

Instead he tackles whatever is before him, gets his work done as well and as quickly as possible, and then he works in as much fun as he can—such a great way to live life to one’s potential.

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.

Serenity

Many people have asked me if my faith has helped me as a caregiver.  I'm often reluctant to answer with more than a short, "Yes."  I have always been private about my faith and yet I consider myself a deeply spiritual person. I pray constantly, for family and friends throughout the day, and every time I hear an ambulance go by. I've tried meditating to quiet the noise in my head, but have not been able to master the practice. The prayer that has helped me most, and that I repeat to myself daily, is this section of the Serenity Prayer.

It's simple, yet profound. I find it comforting as well as informing. This simple prayer helps calm me when I want answers and I'm not sure there are any. What words or meditations help you when you try to destress or need an emotional boost?

Carefree

When I was a full-time caregiver, I wondered:
What must it be like to have an uninterrupted life?
What must it be like to have everyday worries that don't involve life and death?
What must it be like to feel carefree?
Of course I knew the answers, because most of my life had been that way--full of fun, relatively stress-free. I had a charmed life. Until my husband was run over by a car, and my father started acting strange (dementia) and my mother was told she was dying.

I now know what I didn't know before--that we all have freeze-framed times in our lives. Some last just a moment. Others freeze for years while life on the "outside" plays itself out. I remained in my frozen bubble for sometime, but in 2010, it melted, and I came back outside to join the parade. And yet, as I join in the daily run around of every day, I am now acutely aware of those that are locked in their freeze framed airless time zones...my neighbor, who had a stroke at age 34 and still cannot walk or talk on his own.  The people I have met who have endured injuries and illnesses far worse than I could ever imagine.

Can you ever truly forget once you have been touched by deep sorrow and loss?
Is there ever such a thing as feeling carefree again?
Maybe not, but there is peace. And there is great joy in helping those you know who have entered the dark place where you had once been.

Helping heals.

Behavior and Brain Injury, (it's not always about the brain injury)

As a kid, we often don't want to go to school, but we have to. As an adult, we often want to attend classes and seminars, but we don't have the funds or the time.

As a participant on a panel at the Virginia Department of Rehabilitative Services, where we discussed "How we Coped" with other caregivers, I was invited to stay at this full day conference bursting with information and speaking talent.

I was lucky enough to hear a talk by the inspiring Dr. Harvey E. Jacobs. The title of his talk was: "Brain Injury and Challenging Behaviors," but the content extended out to the family, community, world, ecosystem, and galaxy! His use of an animal slideshow at the end with a series of poignant questions places every human on earth flatly on a level playing field as he peels away the layers of what makes us all essentially human.
"Where do you live?" he asks. "Who are your people?"
"Do you live alone?"
"What do you eat?"

By the end of this slideshow, everyone in the room is moved to tears because he's demonstrated, through a simple series of questions and pictures, that no matter what behaviors anyone exhibits, no matter how different or dysfunctional someone may seem, we are all far more alike than different. We all require the same needs: a home, someone to love and love in return, and something to do. And when we act out, we are often reacting to our environment, our insecurity, or the fact that others have decided to take control of us "for our own good."

Thank you Dr. Jacobs for a lesson I hope to remember always.

April

April is an ambiguous month for me, filled with many emotional highs and lows. April 10^th is Anna and Mary’s birthday—one of the best days of my life, the day my two beautiful daughters were born! But on April, 11, 2007, my father passed away, and I miss him every day. A few days later, it all culminates with the anniversary of April 13^th 2002, the day that changed my life forever, the day I answered the phone in my kitchen and heard that Hugh was rushed to the hospital.

At the time, I had no idea our lives would be so incredibly altered, but looking back, 3:00 p.m. on April 13, 2002 began a whole new trajectory for me and my family. What seemed to be a regular day suddenly became a turning point.

The older I grow, the more events will be tucked into April’s calendar—new babies will be born, (Betty’s daughter, Katie, just had a baby boy named Jack yesterday!) and there will be weddings, funerals, engagements, and events we can’t begin to imagine. Both of my girls will be home tomorrow, and they will plant me a vegetable garden for my birthday (It was in March, but we waited to be together to celebrate) I can't think of a better gift than a spring garden full of promise. What do I wish for? Just this: the family in the yard, the sun shining, simple food, the sound of the voices I love to hear and their laughter--just an ordinary day.

Life is unpredictable, and full of wonder.  If I’ve learned one thing, it is to try to simply bend with the twists and turns life takes me on, to lean into the wind, and let it carry me along, because I know that even though there will be dark days, there will be an equal measure of light, if I only keep my eyes open.

Balance and Brain Function

I'm recommending a link as backup evidence of what I saw with my own husband's recovery after his TBI. As Hugh worked on his balance and strength training, his cognitive abilities soared. In my opinion, and apart from any science, I saw the greatest improvements in him when he began cycling and surfing again, two sports that require high levels of balance. The particular study I am posting was performed on elderly people in their upper 80's, which gives me great hope that ALL of us can improve our physical and cognitive abilities throughout our lives by improving our strength and balance. And, so what if it doesn't work...we will become stronger anyway, and it can't hurt to try this!

Deciding what particular routine should be done to achieve these results should be determined by each individual with their doctor. Best of luck. Keep striving! Here's the link:
http://www.ncbi.nlm.nih.gov/pubmed/18007119

Spring

Spring reminds us that no matter how long and hard the winter, new growth emerges.

In Virginia, our winter has been unseasonably mild and sunny, but it's still a thrill to see the Bradford Pears and Crabapple trees budding, and to be surprised by bright yellow patches of daffodils. Our attraction to and appreciation of flowers is a universal gift. Flowers make us breathe deep, they make us smile.

March is Brain Injury Awareness Month. The new campaign, "Anytime, Anywhere, Anyone" is in full swing.

Caregivers of loved ones with newly acquired brain injuries will be far too busy and preoccupied to stop and smell the flowers. Life stops for them for a long period of time, as they adjust to a new rhythm and reality.

Let's be caregivers of caregivers! Give a flower to a caregiver you love this month, and watch the smiles bloom.

Look to Those Who Inspire

We live in a time that offers easily accessible information of all kinds regarding illnesses and disabilities. We can connect with people all over the world on the Internet, even people who have walked in our shoes who might offer a different perspective. That's why it's important to know who we can connect with that will boost our own wellbeing.

Through the Internet, I just met Janet Cromer, author of Professor Cromer Learns to Read, a story of love and commitment in the most difficult of times. I came away amazed at the intelligent strategies she used to deal with her husband's brain injury, dementia, and parkinson's disease as she cared for him at home. Her story is complex, as many of our stories are; it's deeply tragic, yet shining with moments of pure joy and revelation.

And through a small blurb in Time Magazine (Feb. 12, 2012 issue), I learned that professional skier, Jill Kinmont Booth, a U.S. champion skier in 1955, has recently passed away at age 75. Jill broke her neck during a race, and was paralyzed, yet she learned to use her neck and shoulder muscles to write, paint and study. She was a teacher for thirty years. Her quote says it all, "To get mad...doesn't get you anywhere. You sort of look for what's good that's left." These are wise
words we can soak up and use to push forward.
Happy hunting in your search for inspiration, it flows all around us, waiting for us to take notice.

Marriage after TBI

Several people have asked me how Hugh and I stayed together in a loving relationship after TBI, so I’ve been giving it a lot of thought. First, I think it’s our history. We had been married 24 years at the time of Hugh’s accident, and his accident only deepened my commitment to him. I wanted him back, and I wanted him to recover to his full potential. That was my number one goal.

Second, although we experienced financial strain (Hugh lost his job), we continued to have a steady income after his accident, (social security and disability income). Many fights in marriages are caused by money problems, but Hugh and I had always lived within our means, and we continued to live within our means during his rehabilitation, so we did not fight about money. I did, however, stress about our future, and how we would pay for it all down the road, and that was hard enough, so I can’t imagine being flat broke and in debt throughout this ordeal.

Third, we had great doctors and therapists. Dr. G. at HealthSouth gave us advice on Hugh’s first day in rehab: be kind to each other. This advice, while it sounds simple, is extremely important. Whenever one of us snapped at the other, we’d remind each other, “This is hard on me too, so please don’t be cruel.” Kindness leads to so many other good feelings: gratitude, endearment, and love. Making a commitment to be kind to each other, and actually living it, can make a big difference in a relationship.

Fourth, we had strong ties to family and friends. We had confidants. We could vent to others in a safe way and feel supported. We had people in our corner, and we will never forget those that stuck by us throughout.

Fifth, we had counseling. I talked to the LCSW at HealthSouth, another social worker outside of HealthSouth, and Dr. Kreutzer, neuropsychologist, along with some of his fellows. Hugh met with the LCSW at HealthSouth and a support group there, as well as Dr. Kreutzer. These sessions provided us with the information, tools, and coping mechanisms we needed to move forward.

Along the continuum, there were times when things felt hopeless, days when we'd rather not get along, and long, lonely hours spent wondering how we'd ever get through this, but Hugh and I knew one thing: we wanted to stay married, and if we were going to stay married, we wanted it to be as good as it was. As it turns out, it’s better. We are more tuned in to each other than ever before. I realize that we are particularly fortunate because Hugh made such a strong recovery, and he never had a negative, angry or abusive personality change. We both feel fortunate every single day for that, and we both want to make the most of these midlife years together, because every healthy day we live feels like a gift we’re unwrapping together.

A Loss of Words

I just learned that Jeffrey Zaslow died yesterday in a car accident. Zaslow is the author of two books that mean a lot to me: The Last Lecture, a book given to me by my daughter as a graduation gift, and Gabby, the story of Gabby Giffords and Mark Kelly, and her triumph over tragedy.

Zaslow worked at the Wall Street Journal, and is said to have been an inspirational man. I wish I had known him. In his own way--by writing for both Randy Pausch and Gabby Giffords--he was a caregiver. He shaped the words they needed to say, so millions of readers would understand, not only their illness and injury, but the spirit that carried them through it.

In the case of Randy Pausch, Zaslow wrote the story that made the book an overnight success, and it's easy to see that Randy and Jeffrey shared many of the virtues illustrated in the book: "Earnest is better than hip," and "Enable the dreams of others."

It's such a loss to society when someone like Zaslow dies suddenly and prematurely. What would have been the next great book he would write? How many more people might he have touched? All we can do is honor the lessons left behind, emulate his great work, and pay it forward in a way that is uniquely our own. Thank you for teaching us so much, Mr. Zaslow.

Sleep Soothes

I just read an article worth sharing in Science Daily:

Dreaming Takes the Sting out of Painful Memories

The article illustrates the benefits of dreaming in people with post-traumatic stress. It explains how dreaming allows a person to reexperience a stressful event without the interference of stress neurochemicals. This effect takes the edge off trauma, and we wake up better able to cope.

I love that there is now science to prove how very important sleep is to caregivers and others who experience PTSD.  Happy snoozing and sweet dreams!

The Psychological Crib

Yesterday, a side to our story was told in an article in the New York Times, that is expressed in my book, but in a different way. (http://www.nytimes.com/2012/01/10/health/when-injuries-to-the-brain-tear-at-hearts.html).

With a scientific slant, the article exposed the challenges psychologists face when counseling couples with marriage problems after one person has changed drastically following a devastating injury. 

After a brain injury, roles flip. The caregiver usually becomes a “guardian” rather than a partner, at least for some period of time after the injury. The injured person is suddenly thrust into a world where he (or she) is not only physically limited, but placed in a psychological crib, and constantly reminded that he can no longer do the things he once did with ease—eat, walk, drive a car or climb stairs alone. And then he's told he no longer makes sense, he doesn't remember, and he's confabulating (creating false memories). It’s easy for couples to become locked in disagreements or to feel resentful of each other. It’s suddenly hard work to get along—hard not to miss the easy relationship that once felt so comfortable. As the injured person heals, the caregiver must pull back, stop hovering, and allow the injured person to take chances in a world that suddenly feels like a dangerous place.

It’s not only the injured person that changes in an accident—quite often, the caregiver changes. Sleeplessness, anxiety, frustration, and fear can alter a personality and strain relationships in the process.

All of this was conveyed in the Times article. Counseling is helpful, but what tools can counselors use to help couples going though this? For us, communication was important. Constantly putting ourselves in each other’s shoes helped. We had to remind each other that we were in this together, we both wanted to stay married, we both wanted to reach a connecting point, a place of mutual respect, understanding, and love. I’m so glad we did.

Hugh and I are more tightly bound now than ever before, and even though letting down the guardrail of the psychological crib (or as my husband would call it: stopping the nagging) caused a good deal of anxiety as I watched him conquer feat after feat, anxiety can be overcome, but the loss of a soul mate, never.