Never: A Caregiver's Story of TBI
The word 'never,' by definition, means in no way, not again, at no time, in no case. Never. Its a word that those of you who are brain injury survivors or caregivers of a brain injured loved one, have heard at some point. Was it in the beginning of this adventure, when your loved one lay in a coma and the doctors said he/she would never regain consciousness? Was it once your loved one entered therapy, and someone told you that he/she would never walk, talk, see, eat, feel, laugh? Was it further along when you were told that your loved one would never live at home, never be able to do anything on his or her own, or that things would never be the same?
Never is a long, long time. When my domestic partner, Al Calabrese, had his head-on collision on August11, 1995, the ER doctor said hed never make it to the NICU. When he made it to the NICU, the trauma physician said hed never make it to tomorrow. When tomorrow came, he said over and over, that Al would never be anything more than a vegetable, lying in a bed hooked to a feeding tube. He knew this because he had seen a thousand―no 2,000―cases like Als . . . there was no hope. Well, to me, never meant only one thing: never blindly believe the doctors and never give up. I didnt and neither did Al.
He sustained severe brain damage. Although his brain never swelled, as is often the case, he was leaking brain fluid through his ears, so this wasnt a good sign, they said. He had brain stem damage, occipital lobe damage, a broken throat, collapsed lung, and other areas of brain damage that at the time I was either not allowed to know about, or was told and just didnt believe. Al was never going to be able to control his temperature, never be continent, his kidneys were failing, they said, and he would likely never breathe on his own. Furthermore, hed be blind in one eye and deaf in one ear. Hed never recover.Those first few weeks and months were torturous. Those initial signs . . . the opened eyes, the responding pupils, the controlled body temperature. The first smile. The first command acknowledged. Looking at the monitors as they gradually reduced the number of assisted breaths until, 19 days after the accident, he was breathing on his own. His urine was clear, his temperature, blood pressure, pulse, normalized. To the trauma physician, this was all insignificant. For me, it was the juice, the excitement, of bringing him back. For the first time in my life, I felt the power of my faith, and the zest for life.
It was exhilarating watching as he emerged. I tape-recorded his tools, a hammer, a drill and a saw, at the urging of one of our friends who reminded me that Al loved his tools almost more than he loved me. Sure enough, when I played the tape, Al immediately turned his head, recognizing the sounds. I brought brain power tapes, musical tapes, even a tape of his own voice from the answering machine, books, pictures, magazines, playing cards, garlic, stuffed animals, sea shells and salt water―anything I could think of. I encouraged people to visit as often as they were able and just told them to keep talking, touching, feeling, loving and kissing him. Seems like I never missed a day, in between working a 40+ hour/week job with several night meetings in our community, 35 miles from the hospital, even if all I could muster was the energy to drive to the hospital and spend one hour by his side. Despite all the odds and all the negativity, I lit candles at St. Michaels Shrine and brought holy oil to anoint him each visit. I simply never gave up. I cried. I prayed. I hoped. I dreamed. I drank myself into a stupor each night. But I just never gave up.
Al made it out of the hospital after two months, then spent months in an acute rehab hospital. There he spoke his first words, received intense therapy and I took my first break, flying to Seattle to see some friends and just unwind a little. Al was in rehab, not a nursing home, and we were on our way!
After acute care rehab could do no more, he was transferred to a long-term rehabilitation facility about 100 miles away from our home where he spent the next 16months. They said Al would never do anything on his own and would never live at home again. Even if he did, they continued, hed need constant supervision. While still at long-term rehab, we began practice visits at home, first day trips then over-nights. I called upon Als friends and we blew out the bathroom, making it handicap-accessible complete with a roll-in shower. We built a handicap ramp in the garage.
In February 1997, Al was discharged to the Tampa V.A., as a transition to get him in the system. He was discharged to home on April 2, 1997, and has been here ever since. At first, he did require constant attention―more for my peace of mind than his express need. I enlisted his kids to stay with him when I had night meetings, or I dragged him along if I had to. I found a TBI-oriented ALF just a few miles away and was able to keep him in day care while I worked, for 3 months at very nominal cost, but by August, he was able to be home alone all day. Now I can pretty much come and go as I please. Al keeps himself busy and life just goes on.
They said Id never get professional therapy for Al beyond a year post accident. By pure determination, I have managed to have formalized therapy continue, to date, through many sources, including the V.A., his insurance, the Florida Brain and Spinal Cord Injury Program and direct out-of-pocket. He has responsibilities at home: folding laundry, sorting coupons, preparing the grocery lists and most important, exercising his memory and body, and visualizing his healing. They said his damage was so severe that hed never be able to learn anything. Well, Al was a smart man before the accident and I had been told early on that we only use 10% of our brain. I figured if he nuked 60% of his brain, there was 40% left plus the other 90% of untapped brain power. Today, Al has learned to use a personal computer (he plays Scrabble, Monopoly, Wheel of Fortune, card games, etc., (some of which require making adjustments to the computer or changing out CDs) and among other things, he has mastered the fine art of hanging up on telemarketers. When he needs me during the day, he calls me. Luckily, (on some bizarre level) my boss had a brain injury when he was a young man and is understanding and sympathetic of Als needs. I work only two miles from the house so I can be there at a moments notice and I never get docked for time spent caring for Al.
Never is a long, long time and brain injury is a complicated mess. No one really knows what the outcome will be. No one can predict how a TBI victim will respond to therapy. Sure there are the statistics, but in the long run, only time will tell. What has bothered me the most is why doctors and therapists paint such a gloomy picture of the recovery process. Just last week, Al's neuropsychologist told me to be realistic in case Als ability to process information never improves. They just NEVER stop with the never! I have heard it is because they dont really know enough about brain injuries and cannot predict an outcome. Ultimately, they are afraid to give false hope. Why then, are they so quick to give false despair? Never is a really long time.
They said Id never be able to handle the responsibilities of being his caregiver. I was warned, over and over, that it would be difficult and overwhelming. They said Als personality would change and he would likely become nasty, demanding, selfish and cruel. They said that the relationship would wither and that I would seek companionship elsewhere. In truth, for me, as Als caregiver, I am first his girlfriend and best friend, then I'm the caregiver, taskmaster, organizer and therapist. We love deeply and share feelings just like we did before. We laugh all the time. Life is a joke. Al still wakes up with a smile on his face and theres a pitter-patter in my heart when, after a long, crazy day at City Hall dealing with the lunatic fringe, I walk in the door and say Honey, Im home!
I take time for myself (you cant save the ship if you dont save yourself), attend support groups and schedule respites. I freely call upon his family and friends without guilt―they have to help, I figure―thats just part of the deal. And believe it or not, they jump right in because by being part of his life they continue to be part of his healing.
What's in store for the future? I dont know how much more progress Al will make. I dont now if hell ever walk again. I dont know if hell ever work again. So called measurable progress is slow now, so far past the accident. I only know that day by day, we carry on. I am glad he survived. Im glad I had the courage to stand by his side when, as "a girlfriend," I really didn't have to. Now more than ever, I treasure the time we spend together and look forward to each new day with an unbridled expectation of things to come. God bless all of you who may read this. There is life after TBI.