Brainwaves

Brain Injury Alliance of Arizona Blog

Tips for Fighting a Hard Fight

By Joel Goldstein

Joel Goldstein was a longtime caregiver to his son Bart, who sustained a traumatic brain injury (TBI) in 2001. Joel and his wife Dayle learned many lessons through trial and error while supporting Bart, who grew from an adolescent survivor of brain injury into a beloved and vibrant young man. Being part of a family caregiving team is an ever-evolving art form where joy and pain may often be intertwined. In support of millions of families caring for a loved one with an acquired brain injury, Joel shares his reflections on caregiving.

Date Night
Seek daily doses of good and beautiful things at one’s fingertips.  When you’re up to your eyeballs, renew your zest for living, your appreciation of life’s sweetness and small pleasures.
Christmas 2001 my wife and I were plunged into a parent’s worst nightmare — a car accident resulting in our teenager’s severe traumatic brain injury.  After a month-long coma Bart gradually emerged with disabling cognitive, emotional, and physical deficits.  Eight months of grueling hospital therapies and the verdict is in – the school district agrees with the hospital – Bart is not ready to return to a classroom and would be better served by placement in an institution.  We railed against warehousing our seventeen-year-old son in a convalescent home, and fought to win Bart a chance to struggle, heal and make progress.  Then we began exploring safe alternative therapies, like HBOT. Those therapies transformed the arc of Bart’s life.  We were lucky. Some families simply cannot bring loved one’s home, because of family members work schedules, physical or emotional limitations, or lack of adaptive living arrangements and homecare coverage or other factors beyond their control.

If you had known him, you would find Bart was a lively, charming young man, living nearly independently in his own apartment, holding down a part time job, had made new friends and moved on.  He often joined me in addressing brain injury forums.  How different the outcome had we heeded the advice of well-meaning busy bureaucrats.  Our son Bart passed away last year, 21 years post-injury, but not before making a remarkable recovery driven by alternative therapies, especially HBOT.  He lived a full and meaningful life dedicated to encouraging and inspiring others on similar journeys.

Our family’s journey has been long and complicated — with twists, stumbles, set-backs, wild goose chases – even a few back-tracks.  Dayle and I gradually puzzled out some useful lessons on navigating the harsh alien landscape.   I would like to share some strategies we have used to manage and cope with the consequences of ongoing caregiving while preserving our balance, optimism, resilience, and zest for life.  TBI is a life-long condition, so the search for remedies for the survivor, and for ways to take care of the care-giver, is ongoing.

Tips for Fighting a Hard Fight

By Joel Goldstein

Joel Goldstein was a longtime caregiver to his son Bart, who sustained a traumatic brain injury (TBI) in 2001. Joel and his wife Dayle learned many lessons through trial and error while supporting Bart, who grew from an adolescent survivor of brain injury into a beloved and vibrant young man. Being part of a family caregiving team is an ever-evolving art form where joy and pain may often be intertwined. In support of millions of families caring for a loved one with an acquired brain injury, Joel shares his reflections on caregiving.

Christmas 2001 my wife and I were plunged into a parent’s worst nightmare — a car accident resulting in our teenager’s severe traumatic brain injury.  After a month-long coma Bart gradually emerged with disabling cognitive, emotional, and physical deficits. 

Eight months of grueling hospital therapies and the verdict is in — the school district agrees with the hospital — Bart is not ready to return to a classroom and would be better served by placement in an institution.  We railed against warehousing our seventeen-year-old son in a convalescent home, and fought to win Bart a chance to struggle, heal and make progress.  Then we began exploring safe alternative therapies, like HBOT. Those therapies transformed the arc of Bart’s life.  We were lucky. Some families simply cannot bring loved one’s home, because of family members work schedules, physical or emotional limitations, or lack of adaptive living arrangements and homecare coverage or other factors beyond their control.

If you had known him, you would find Bart was a lively, charming young man, living nearly independently in his own apartment, holding down a part time job, had made new friends and moved on.  He often joined me in addressing brain injury forums.  How different the outcome had we heeded the advice of well-meaning busy bureaucrats.  Our son Bart passed away last year, 21 years post-injury, but not before making a remarkable recovery driven by alternative therapies, especially HBOT.  He lived a full and meaningful life dedicated to encouraging and inspiring others on similar journeys.

Our family’s journey has been long and complicated — with twists, stumbles, set-backs, wild goose chases – even a few backtracks.  Dayle and I gradually puzzled out some useful lessons on navigating the harsh alien landscape.   I would like to share some strategies we have used to manage and cope with the consequences of ongoing caregiving while preserving our balance, optimism, resilience, and zest for life.  TBI is a life-long condition, so the search for remedies for the survivor, and for ways to take care of the caregiver, is ongoing.

Date Night
Seek daily doses of good and beautiful things at one’s fingertips.  When you’re up to your eyeballs, renew your zest for living, your appreciation of life’s sweetness and small pleasures.
It is best to forgive, though most of us feel the impulse only waveringly if at all. I personally struggled with this demon.   Smoldering anger towards the boys involved in Bart’s accident and their families tormented me for years.  What a relief to finally forgive them for moving on with their lives and wish them only the best — like laying down a heavy burden.   As with most things, forgiving gets easier with practice.
Count one’s blessings daily.  If things are too bleak, or you are so blitzed that nothing springs to mind, keep a log and at bedtime review three good things that happened during the day.   When not enough good things are happening, make them happen!   Treat a stranger to an act of kindness — that counts as a good thing for sure, and as reminder that one is not helpless, but can still make one’s mark.  Who is it that said if you want to make someone happy, be compassionate? And if you want to be happy, be compassionate.
Live for the day – one day at a time.  Resist the seductive tendency to dwell on ‘the golden days of the Past,’ or to worry and obsess about the Future.  Besides, there is nothing much to be done about either.   Be like the marathon runner focused on just the one mile at hand.  It is not that one mustn’t make future plans, just don’t fret about them or invest too much energy.   Remember today’s the day, the Olympic Games.  If your mind clings stubbornly to the past, or insists on worrying about the future, refuse to go along.  Try saying out loud, “Clear, Cut, Delete” — reboot your mind in a more useful direction.
If your heart is breaking, try singing a different song.  The old Quaker hymn, “How Can I keep from Singing?” eased me out of some very dark spots.  Keep a playlist of ‘your songs’ handy in the car.  If you can play an instrument that is even better– but fill the void with sacred sounds.  ‘Sacred sound’ transports you to a safe, peaceful, and hopeful place –it may be Mozart or Motown, chakra chants or show tunes.  As Duke Ellington said, “If it sounds good, it is good.”  Feeling stressed, angry, anxious, or blue?  Try playing sacred music quietly in the background on your computer, even at work.
Laugh a lot. If you’re not naturally inclined, push yourself, rent movies, go visit funny friends.  They’ll lighten the load for sure.  Dayle and I honestly believe that laughter promotes healing.  So, we jumped at every chance to enjoy live theatre, movies, and TV shows, anything that promised to be funny.   If perchance someone suggested watching a real tear-jerker instead, I would likely reply, “No Thanks, we’re on a sadness reduction diet.”    We each made a conscious decision to go round with a smile on our face.
Surround yourself with positive people.  Seek them out. They’ll buck you up, inspire by example, and keep you in psychological and spiritual ‘training’ for the long haul.  Join their ranks.  If you don’t know enough of them, find resources at ‘support groups’ for TBI (or whatever else ails you or your loved one) or other assemblies of people like churches and synagogues, though beware negative types haunting their halls. The idea is to find people who will help you stay brave and strong so you can be there for the ones really counting on you.
Avoid negative people. The corollary to the previous point is avoiding negative people.  Not as simple as it sounds, since they may include family and other loved ones.  ‘Negative’ is a comprehensive category including whiners, ‘nay-sayers,’ melancholic and depressive types, cynical and sarcastic wise guys, put-down artists, selfish blow-hearts, pessimists and many others.  If they make you feel lousy, they are going to sap your strength. You’re in for a long, hard fight; these dour, toxic folks make it harder, often without malice, just by ‘being themselves.’  If it is too emotionally taxing to drop them completely, then cut way down on exposure time.
Safe haven. No one is strong enough to successfully wage this kind of struggle solely by ‘triumph of will.’  Find a wing to nestle under, a safe, calm place, a spiritual haven.  Daily prayer, for those inclined, is best.  I can’t imagine getting by without it.   But regular meditation, ‘positive thinking,’ ‘kything,’ visualization, and positive affirmation are good too.   For some, inspirational music, poetry, and reading are just the thing.
Take care.  Consider vitamins, meditation, yoga, and sensible exercise to keep you strong.   Moreover, there’s no disgrace in seeking a doctor’s help managing troubled sleep, anxiety, depression or other miseries.  I reached in the medicine cabinet for a ‘father’s little helper’ most nights for years.
Think outside the box!  Many medical practitioners at the zenith of their careers are too busy or uninterested to stay informed about developments outside mainstream standards of practice.  So, it falls to us to explore alternative therapies, and to keep abreast of which ones may hold real promise.  But faced with the chaos of ‘alternative therapies,’ how can one determine which approaches are safe and likely to work?   Try to find objective, third party advisors, in addition to your primary docs, to help pick the oats from the manure.   And remember Hippocrates principle – do no harm – though that may not always be possible.  Unconventional therapies transformed Bart’s life and prospects: notably hyperbaric oxygen, neurofeedback, and mega-doses of Omega-3 fish oils.  He also attended three semesters of cognitive rehabilitation.  Therapies like HBOT are mainstream medical practice in counties as diverse as Israel and China.  (For a discussion of the process of vetting alternative therapies, please see my article written exclusively for Brainline, “Fighting the TBI Wars: New Alternatives for TBI Survivors.”)
Patience. In the war against TBI there are no decisive battles, just a seemingly endless string of skirmishes; a protracted contest of endurance.  One must learn patience – to work on a long-time horizon and break down an overwhelming challenge into smaller manageable pieces.   Scale the monster down to size.  Some pieces are tougher than others to resolve – you may have to circle back around for those later.  Try to be of good cheer and keep plugging away.  Get through the day.  When things seemed unbearable, I would remind myself that the day would soon be over — tomorrow, another chance to rise and shine.  Do not let yourself get bogged down on What It All Means or on the Big Picture — focus instead on the concrete task at hand.  We rebuild our family’s life one brick at a time.

Happy helpers.Designate friends or family members as ‘happy helpers.’ Let them sweat the small stuff!  They can lend a hand with practical chores, leaving you free to focus on more essential needs.   HH’s can help by shopping for and preparing meals, shuttling kids to practices, even writing email or Facebook updates, keeping friends and well-wishers informed about your loved-one’s progress, etc.  If you can manage, recruit a team of ‘HH’s – that way members can rotate and avoid burnout.  Don’t be afraid to ask.  Folks are anxious to help, and will be glad for the opportunity.  If there are other children in your family, it is vital to set aside time for them too.  They often feel overlooked and ignored, which may spell trouble down the line.

Daily doses of good and beautiful.Above all, seek daily doses of good and beautiful things at one’s fingertips.  When you’re up to your eyeballs, renew your zest for living, your appreciation of life’s sweetness and small pleasures.  Make time to play with your dog, to smell the flowers, listen to your favorite music, or contemplate nature’s beauty.  No matter where you live, whatever your aesthetic preferences, heed the poet’s words, “Earth’s crammed with heaven, and every common bush afire with God; but only he who sees, takes off his shoes.  The rest sit around it and pluck blackberries.”
Joel Goldstein is author of No Stone Unturned: A Father’s Memoir of His Son’s Encounter with Traumatic Brain Injury, (University of Nebraska Press, 2012). Along with several distinguished physicians, the Goldsteins formed a foundation to explore and promote the use of safe alternative therapies for brain injuries, The BART Foundation, a 501(c)(3) public charity www.thebartfoundation.org  It is part of a nationwide effort to fund HBOT for veterans suffering from TBI/PTSD, led by Treatnow.org.

ABOUT BRAIN INJURY ASSOCIATION OF ARIZONA

The Brain Injury Association of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

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