When the Dust Finally Settles: Strategies for the Long-Term Caregiver

When the Dust Finally Settles … Strategies for the Long-Term Caregiver

Christmas 2001, my wife, Dayle, and I were snatched from ordinary lives and plunged into a parent’s worst nightmare: a car crash resulting in our teenage child’s traumatic brain injury. Bart remained in a coma for 30 days, and then with a trache and stomach peg freshly inserted, he was shipped off to Helen Hayes Hospital for rehab. He’s barely conscious; we’re reeling from the strain of a bedside coma-watch. Months of hospital “boot camp” followed by outpatient clinics, days and weeks stretching to months and years. Bart’s losses are staggering. Struggling to piece our lives back together, we gradually strip down to essentials and discard most everything else — a wrenching transformation into lean, mean parent-advocates.

Each of us mourns the boy lost in the crash, even as we struggle to relate to the stranger in our midst. We witness Bart’s adoring little sister’s bewilderment and hurt in the face of his wild mood swings and angry outbursts, his mom’s high anxiety when riding in a car, and my chronic insomnia. We’re walking wounded.

Sometimes we just had to get away. After Bart turned in, usually around 9:00 pm school nights, Dayle and I would steal into town and walk around the sprawling 200-acre college campus near our home. Though filled with sweet memories, campus was now haunted by nagging images of what “might have been.” Pesky undergrads were always out and about, rushing, laughing, lounging, and smooching in all their youthful vigor and glory. I was unsettled by the spectacle of what these kids took so for granted — everything Bart was missing. Swept by feelings of wistful longing and sadness, I resented these young people for the thoughtless indulgence of their precious gifts. At the same time I was repulsed by my own petty feelings. Was I turning into some kind of creature of the night, a vampire who hates youth, vitality, and life itself? It was all mixed with a heavy dose of pity for Bart, who had suffered much, yet was not near the end of his trials. Pity for Bart, blended with self-pity, making for a sickly, sickening brew. These dark, creepy feelings unnerved me, and I vowed to avoid campus, so that I wouldn’t feed the beast. 

Then a few weeks later, I’d forget, we’d leash the dog, and be off to the college again for some quiet time, and the dreadful feelings would well right up, which though not exactly jealousy, were akin to envy.  Each time I’d be surprised by my reaction, since Dayle and I had always enjoyed the company of young people.  I’d been a camp director and president of our local branch Y. But now, somehow Bart’s life and our lives seemed to suffer by comparison to these joyous youngsters. I was sad and ashamed of harboring such base and unworthy feelings. Even counting my blessings — an habitual antidote for heartache — couldn’t drive them away. Adding to the general gloom, Dayle pointed out that any one of these kids, bursting with energy and life, could be laid low by a small thing, Life is so damn fragile. Wrestling with these feelings was a recurrent low point, one I never completely resolved, though mercifully they slowly faded over time as Bart continued to recover.

Our family’s journey has been long and complicated — with twists, stumbles, set-backs, wild-goose chases, and even a few back-tracks. Dayle and I gradually puzzled out some useful lessons on navigating the harsh alien landscape. It is plain that there is no foolproof formula or ready roadmap to follow in case of catastrophic illness, so you’re sure to make mistakes. But don’t be too hard on yourself, or on others. Faced with a crushingly powerful adversity, we can only try doing our best.

I’d like to share some strategies we’ve used to manage and cope with the consequences of ongoing caregiving while preserving our balance, optimism, resilience, and zest for life. These suggestions are not meant to circumvent the natural and necessary processes of grieving. Nor are they proof against the gauntlet of everyday torments we sometimes must push through — anger, doubt, frustration, grief, guilt, loneliness, regret, sadness, self- pity, worry … you name it. TBI is a life-long condition, so the search for remedies for the injured person, and for ways to take care of the caregiver, is ongoing.

So, here we go:

It’s best to forgive, though most of us feel the impulse only waveringly if at all. I’ve 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’re 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 the act also serves as a reminder that we are not helpless. 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 what we remember as the the golden days of yore, or to worry and obsess about the final outcome. The twin sirens of past and future, if indulged, will surely lure you off course. Besides, there’s nothing much to be done about either.  Be like the marathon runner focused on just the one mile at hand. It’s not that we mustn’t make future plans, we just can’t fret about them or invest too much energy. 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” and reboot your mind in a more positive direction. Hell, I’ve had resort to Johnny Mercer’s lyric, “You’ve got to accent the positive, eliminate the negative, and don’t mess with Mr. In-Between.”

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. Find a song or two or many that give you a boost and bring you back to a hopeful place, then, if need be, literally force yourself to sing. (In the shower or even in your head is fine.) Keep a CD of these songs handy in the car. If you can play an instrument, that’s even better, but by all means fill the void with sacred sounds. Sacred sound can transport you to a safe, peaceful, and hopeful place — be it Mozart, Motown, chakra chants, or show tunes.

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. Reading Norman Cousins’ Anatomy of an Illness years earlier, we’d been struck by Cousins’ success in fighting off an otherwise fatal condition with only laughter and Vitamin C, even after his docs had given up on him. So we jumped at every chance to enjoy live theatre, movies, and TV shows — anything that promised to be funny.  Since Bart was a teen, we generally skipped sophisticated comedy, but found to our surprise and delight that he loved the movies “Something’s Gotta Give” and “As Good As It Gets,both starring Jack Nicholson, his long-time favorite.  If  someone suggested watching a tear-jerker instead, I’d likely reply, “No, thanks. I’m 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. The worldwide “conspiracy of decency” has members in every community. Seek them out. Join their ranks. They’ll buck you up, inspire by example, and keep you in psychological and spiritual training for the long haul. If you don’t know enough of them, find resources at support groups or other assemblies of people like churches and synagogues, though beware negative types haunting their halls. The idea is to find people who’ll help you stay brave and strong so you can be there for the ones really counting on you.

The corollary to the previous point is to avoid negative people. Not as simple as it sounds, since they may include family and other loved ones. "Negative" is a comprehensive category including whiners, naysayers, melancholic and depressive types, cynical and sarcastic wise guys, put-down artists, selfish blow-hearts, pessimists ... you get my drift. If they make you feel lousy, they’re 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 their negative selves. If it’s too emotionally taxing to drop them completely, then cut way down on exposure time. If you are of a negative bent yourself, follow this suggestion all the same — you may need it the most.

No one is strong enough to successfully wage this kind of struggle solely by the 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, visualization, and positive affirmation are good, too.  For some, inspirational music, poetry, or 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.

Stay open-minded. Think outside the box! Many medical practitioners at the top of their careers are too busy to stay informed about developments outside mainstream standards of practice. So it falls on you to explore alternative therapies, emerging technologies, and to keep abreast of which ones may hold real promise. Try to find objective, third-party advisors in addition to your primary docs to help you pick the oats from the manure.  Unconventional therapies transformed Bart’s life and prospects: notably, hyperbaric oxygen, craniosachral, neurofeedback, Boyle’s Sensory Learning, and neutraceutical supplementation like mega-doses of Omega-3 fish oils. He also attended three semesters of cognitive rehabilitation. Bart’s successes were anecdotal, but a neuropsych exam several years after his injury reported that the examiner had hardly ever seen such improvement in someone so severely injured. (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.”

In the war against TBI, there are no decisive battles, just a seemingly endless string of skirmishes that require endurance. What I wouldn’t give for a shot at a decisive battle, do-or-die, to finally best this monstrous enemy or die trying.  We must learn patience and the process of breaking down the overwhelming, big-picture challenge into smaller, manageable pieces.  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 have seemed unbearable, I remind myself that the day will be over soon and tomorrow is another chance to rise and shine. After all, we rebuild our family’s life one brick at a time.

Designate friends or family members as “happy helpers.” Let them sweat the small stuff!  They can lend a hand with practical chores — shopping for and preparing meals, shuttling kids to practices, even writing email or Facebook updates to keep friends and well-wishers informed about your loved-one’s progress — leaving you free to focus on more essential needs. If you can manage it, recruit a team of HHs,  that way members can rotate and avoid burn out. Don’t be afraid to ask. Folks are anxious to help, and will be glad for the opportunity.

Above all, seek daily doses of good and beautiful things. 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, smell the flowers, listen to your favorite music, And here, one final 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.”

There are no doubt countless other ways to take care and keep on track during a difficult journey. If you have any good ideas, I’d love hear from you.

Written exclusively for BrainLine by Joel Goldstein.

Click here to read an excerpt from Joel Goldstein's memoir, No Stone Unturned: A Father's Memoir of His Son's Encounter with Traumatic Brain Injury.

For more information about the book and the Goldstein family, click here.

Posted on BrainLine September 2, 2014.

Comments (25)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I need advice on our 47 year old TBI survivor who does not communicate well with us,or us with him . we try. He lives by himself but his personal hygiene and household cleanliness is atrocious.He does not want our help. How do we deal with this.His household is very near to very unhealthy.How do we handle this for our own perspective.

Thank you for sharing Joel. You are a wonderful advocate and fantastic communicator. So grateful for your leadership skills and relentless pursuit of manageable solutions. Your thoughtfulness and guidance is first class.

Good advice!

Great article. I think living in the present is really important, and also incredibly hard.
Wonderfully inspiring, as always!
Thank you we got to keep Trying
Joel, your timing of this piece was perfect. We are entering the 7th month of this battle. Like Bart, our son was a passenger in a car accident also. He was in a coma for 3 weeks and has remind in a PVS since. We are told to have "cautious optimism". Your whole article spoke to me, however the paragraph "In the war against TBI, there are no decisive battles"..well, I really needed to hear that today. Thank you so much for your timely post.
I really needed to read this today as I've gone through everything you wrote about here.
You are blessed to have family and friends for support. I am my severe TBI son's sole caregiver and we are alone, and I have to go to work and do EVERYTHING. I am too old to keep this up! We have already moved a few times, I still need to downsize more. His post acute rehab didn't help much, he still just wants to drink and he thinks he's normal, so he basically flew under their radar. Back home now with a LOT of verbal abuse aimed at me. Everything is unsettled and horribly terrifying. One of us will lose the other eventually, and soon we'll both be gone. Just sayin' you are incredibly blessed to have a good support system. This is an essential that some unfortunate "survivors" don't have.

Hugs. I think you probably qualify for some respite hours.

Thanks for taking the time to write this.
It is a huge compliment to you that your words can have meaning to someone whose son is 7 months post injury as well as someone whose son is 7-1/2 YEARS post injury. That is us and thank you for your hopeful insight. To someone who once felt very isolated in their journey with a brain injured young person, you are very well spoken and write well too! This is important to those of us who are looking for real-life similarities instead of medical professionals' clinical approach and dialogue. Thank you to making your experience so real and down to earth. --Karen
Wonderfully written and amazing inspiring journey
Awesome, Well said.... I appreciate y'all!
Wonderful article Joel. Ill definitely be keeping these in mind. Thank you for sharing this.

Thanks so much for sharing, Joel. What a beautiful article.

-The Caregiver Space (http://thecaregiverspace.org/)

Thanks for sharing, Joel.
great story and you are an amazing family.. i have a tbi and i keep away from gp because of their negativity. most doctors ,family and friend don,t understand TBI and give up on the person with a TBI and i can understand why they do this. the health service is not willing or prepared to open the flood gates .brain injury has a knock on effects that effects not only the person with the injury their family , friends,and every one that has a relationship personal or on a professional level and we have to rely on charity for support. more should be done to give family more support. like when ME and MS were not understood they got ignored until the public was made more aware of it with lots of publicity the health service had to take notice.. and thats what we need now. thank you for posting your story and my prayers are with your brave son and your family. best wishes V
Ditto on all of the previous comments and I would add that at the very least, there should be a national attendant care system in this country as they have in Massachusetts and some other states. As an alternative to institutionalizations or the draining of family members who give their all to keep their loved ones with them.
Thank you, your words describe my feelings.
I am almost 10 years in. My daughter has a brain injury, due to inoperable cancer and a major bleed, along with 11 brain surgeries. It has been a very long journey for us all. I needed to read this today! I needed to put things into perspective AGAIN. Thank you so much
I cried because I had no shoes. Then I met a man who had no feet. Thank you I feel your pain.
Wonderful article. Thank you. Living in the present and bringing the past along with it is a difficult thing not to do. We're almost 2 1/2 years out for our daughter and she is doing amazing. Some days I still struggle with deeply missing who she was and forgiving. It truly is a day to day choice.
As my sons caregiver, I can totally relate. Thank you Mr. Goldstein for your words of wisdom. Angie H. (Bens mom)
The dust is still settling, and some days I feel covered in it. Thank you Joel, for your words and for sharing your heart with the tbi community. This is one of the best articles I have read in a while.