Category: Caregivers of TBI Survivors Written by Caregiver
Summary - the cause - the injury - today's quality of life?
2005 Custom Harley vs 2007 Ford Focus; he was 15 feet from our driveway when she pulled quickly away from a stop sign "to beat the truck on the road", only there was a bike on the road too. And she never looked. She got a ticket. Our lives have changed forever. He was a full-time insurance agent with his own agency, and a part time Pastor at our church. Left Frontal Lobe initial impact WITH HELMET. Brain then sloshed into right side as well. Blood clot removed along with all damaged tissue 21 hours after initial impact.
Multiple broken bones as well as total deafness in right ear now on right side due to flipping in air and crashing into curb. Today's Quality of Life? - "at least you still have your husband". Um, no, I really don't. I have a guy who sits across the living room and plays on the laptop or reads his Bible, but rarely speaks. Except to get mad. High-Severe Level TBI. No remote memories, No short memories. Zip. Self-Care for him Good, but he can't be left alone because his brain just doesn't work fast enough if there were to be an emergency, and he's almost set the house on fire a few times-and I was here! He WILL talk if I talk first, but he doesn't follow what I'm saying for very long. Or, I may forget and use an idiom or some other figure of speech, forgetting just how concrete he is now. His "meltdowns" are always my fault, though I've come up with some techniques to hand them back to him and disengage; we'll see how that goes. He won't work ever again. His agency is replacing him with a brand new agent in a week; though they've been very good about sending in subs so we'd still have an income. That's done now. I can't work anymore now; since he can't be left alone. I was only part time anyway. Financially, I'm terrified. VA is supposed to pick up all outside medical expenses incurred - to the tune of total about 200K. The appeal process is in place right now. But I've done everything I'm supposed to do so it's up to God, the Disability carrier, and the VA. Hopefully in that order! I'm exhausted, drained, overloaded, sad, grieving, and lonely. I feel terribly selfish asking somebody to come hang with him so I can go, what? to the grocery store? It just feels selfish to me. My sister is the only one I don't mind asking for help. I know I know. Well, too late, burn out has already happened. And...to top that off, our youngest son is getting married in 3 weeks. Here in our little town. And people will be staying with us. He doesn't DO people, even if they ARE his children...
Please share your experience at the time you became aware of the injury?
My boss walked in my backdoor and said "put the phone down, where's your purse?" And I knew the central siren, calling the volunteer FD, had been for my husband. It happened at the END OF OUR ALLEY! I remember my boss(es) - I worked for both husband and wife, took me up to our ER, and there was a woman from church coming down the hall for another reason; but all of a sudden I was surrounded by about 30 folks from our church. I didn't know, that across the hall, my husband had crashed 3 different times, needing the crash cart, 4 units of blood, his lung sucked back open, etc. My BOSS knew it, cuz he was out in the hall, but he's never talked about it. They flew him down to Great Falls, MT where a trauma surgeon and neurosurgeon were standing by. Much later, who knows how many hours?, they took me back into the ER to see him. Turns out he'd crashed inside the CT unit too. It was bad. Very VERY Surreal. I felt like I was in an alternate universe pretty much for the next 2 days.
Tell about the experience immediately after the injury. Surgery? Coma?
Surgery to remove a growing blood clot and the damaged tissue in his left temporal lobe 21 hours after initial impact. Coma at first, then medically induced coma for 6 days. Began bringing him out of it Friday afternoon as they were getting NO neuro responses when coma meds stopped. Not even for pain stimuli. He extubated himself on Saturday morning, seriously damaging his vocal cords. However, since his neck was too short for the trach to be put in at bedside in ICU on Friday as scheduled, the Intensivist began weaning him off the vent on Friday afternoon, and he was breathing on his own by the time he twisted himself down to pull out ALL his tubes, including his feeding tube, which then had to go in as an NG tube, which he pulled out over and over and over!
Tell us about the hospital stay after the survivor was no longer in a coma
Step-Down Unit - or PCU, Progressive Care. Room directly across from nurses station. I was warned about foul language, and boy, did he save it up for me! He didn't always know my name, but when he was cussing at me, he sure did. They had him tied to the bed in a posey vest; and he'd slip out of it constantly and try to get up and walk around without assistance or a walker. FINALLY, after 6 days of me being in that room with him from 6am EVERY DAY until 7 or 8 at night, the neurosurgeon ordered 1:1 care; a CNA to be with him at all times so he no longer had to be restrained and I didn't have to be there every waking moment. (tho he had "ICU Psychosis" and didn't sleep through the night for another month). It started dawning on me just how long this road was gonna be. They were talking intense in-patient therapy and it would be in a VA hospital somewhere. The private hospital was good. The 2nd VA hospital we got to turned out to be better.
Tell us about the time in rehabilitation?
Though he first had to be at the Helena, MT VA for 8 days with pretty much no therapy at all (there is NO ONE TRAINED EXCLUSIVELY IN TBI in the STATE of MONTANA, in ANY of the Rehab disciplines, INCLUDING, Psychiatry/Psychology!), finally, on August 6th, the VA flew him to Denver, CO to take one of 11 spots in their rehab group. The team was incredible. He was in-patient from August 6th through September 20th, then had daily out-patient sessions until November 8th. We were in Denver for 14.5 weeks. (and I was fortunate enough to obtain living quarters at the Denver Fisher House for all but the first three days of our time there.) He had physical, occupational, speech/language DAILY, 6 days a week, and met with a psychologist once a week. The ONLY issue with switching from in to out-patient, was changing members of the team. Physical parts healed fairly quickly, but when they moved our PT to a different guy, we'd actually already worked with him as he was one of the two Vertigo specialists in PT. Richard's vertigo did, in fact, turn out to be "central", meaning "brain-injury caused", but with sudden total deafness in his right ear, PLUS testing positive for BPPV (a type of vertigo Anyone can just wake up with), Patrick the PT had been called in to consulte with Michaele a few different times, so Richard sort-of remembered him. We also had to change Occupational therapists, and were a bit stressed and tense about giving up Jen. Turns out she works with ALL people Rehab, our new one, Chris's specialty, for 20 years, is TBI. And she's fabulous. And like Michaele in the PT gym, Jen was usually around for a quick hug. Richard progressed amazingly well. They said they'd never seen anyone with high- severe TBI be able to regain 'Executive' thinking before the basic thinking. Meaning, he could solve SOME difficult cognitive concept questions, but he couldn't cross the street, or remember to brush his teeth. They told us we would stay in Denver as long as they were seeing a lot of forward progress, so after 14.5 weeks, they said it was time to fly.
Tell us about coming home!
The drive home was long; we took two days to do it with my sister and I driving. Richard sat in the back and had quiet meltdowns that he wrote in his journal. Our reception into our small town was marked by signs out on the highway-BIG ONES, yard signs with balloons all the way into town, all the marquees in town saying "Welcome Home Richard" - some of them included my name too - and a giant group of friends on the courthouse lawn as we came by. Since everyone knew not to inundate us with visitors, that "Mr French-Fry" as his AWANA kids called him at church, was very different from the one who'd been flown out on July 10th, people brought meals every other day, and pretty much left us alone. We had no therapy to go to, we had no "plan for the day", he wouldn't play any games his SLP had suggested, calls with OT and Psych were frustrating, And then 3 weeks later, on December 5th, we flew back. He had to have his jaw reconstructed, and he'd gone through all the pre-op on our last day of therapy, November 8th. We were there for 10 days, during which time, he also saw the psychologist 3 times and Chris the OT, twice. The SECOND time we came home, on December 15th, we were a bit more prepared for the reality of life in our little town...
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
Terror, Surreal, Confused, Info-Seeking(always), Exhaustion, Surreal, Loss, Grief, Sadness, Yearning, Depression, Disbelief
Tell us about life today?
We now speak to our psychologist weekly and fax her things she needs to know about the day before our 'phone appointment'. We speak with OT about 2 x a month. Richard is slowly beginning to initiate more, today he said he was going to "try to make my own sandwich", and he did it. He's developing a "stop" button for his meltdowns. Baby Steps.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
These seven words: "IT WILL TAKE TIME" and "WE DON'T KNOW" will be the most beautiful and horrible words in your vocabulary.