TBI victims–

one story

When you leave for work at dawn, it doesn’t cross your mind that you won’t be back home for eight months. But that’s what happened to my wife — knocked to the parking lot asphalt when struck by a car backing out of a parking space at the school where she taught.  That event ended life as we knew it. The rescue unit took her to the ER where I saw her an hour after the accident…bruised, unconscious, intubated, head rigid in a neck brace. She was not breathing when she arrived.

After she was stabilized she underwent a CAT scan, MRI and more tests…contusions to her brain front and back, dozens of white spots on the computer images showing axonal diffusion and blood confirmed a traumatic brain injury — moderate to severe — a TBI. Little did I know then.From unconscious to semi-conscious to three days of nearly non-stop sleep. Then came some rudimentary rehab steps, sitting, standing, struggling to even pull on a sock. Swallowing was difficult. Eating impossible. She had to be fed a liquid diet.

When the hospital determined she no longer required the ICU, I learned that she was ready for the next step — an acute care rehab facility — a sort of specialized hospital with 24-hour medical care and a staff of rehab specialists for occupational, speech and physical rehab aimed to help people recover the ability to attend to basic activities of daily living (ADL — most everything in acute care has an acronym). ADL means going to the bathroom, brushing teeth, drinking from a glass, using silverware, relearning the proper sequence for just about everything.

During the six weeks in acute care Bobbi slept in a Vail bed (totally enclosed in heavy nylon and plastic netting to prevent her from getting out of bed) and spent her days in a wheelchair (or as she said “moveable seat”) strapped in with a Posey restraint.

HOW IT COMES TOGETHER
Like most everything in the world of health care…there are only few choices if you don’t have the proper insurance. Acute care runs about $25K to 30K a month excluding medical care.
And acute care stops when progress slows down or plateaus…your insurance company makes that decision because when they stop paying, out you go. The step after acute care is even more mysterious and almost invisible. The acute care case manager said Bobbi would have to go home or to a nursing home. Health insurance doesn’t pay for the NH and I work. Neither was an option. Read on to see how lucky we were. 

TBI: After Acute Care  Post- or sometimes sub-acute care

I was not happy with the options I was presented following acute care. Coincidentally a few days earlier an old acquaintance had called expressing great surprise at the news of the accident. After a short update, he asked if there was anything he could do. I said if there was anyone he knew of with a similar experience, to let me know. He did, as it turned out. I contacted that person whose husband had suffered a TBI. She knew of a man who ran a post-acute care facility (PACF) in a nearby town.

I called and it it turns out he is also very involved in the Traumatic Brain Injury Association in Texas. His information validated my growing notion that dealing with TBI was a hugely complex undertaking. When I discovered by options were so limited I called this contact and wondered about the likelihood of Bobbi being admitted. (I got the acute care discharge news on Monday that Bobbi would need to leave the next day. I called the insurance company to argue for more time at the acute care hospital. After hours and on the phone, I was successful in getting an extra week.)I was also successful in getting Bobbi admitted to the PACF in less than a week when normally at least a month was the norm.

She lived at the PACF for nearly six months. All of this was intertwined with getting Social Security Disability, working weekly with the insurance company case manager and post acute care facility case manager, five therapists, six doctors, traveling daily almost 130 miles round trip from home to the PACF and working a demanding fulltime job. Then halfway through her stay she began having seizures with trips to the ER some 25 miles away. Finally Bobbi was diagnosed with Normal Pressure Hydrocephalus (NPR). She underwent brain surgery for implantation of a shunt to drain excess fluid in the brain which she will have for remainder of her life. She was discharged from the PACF just after Thanksgiving and has been home since. And that begins even a more complicated piece of the story. 

TBI: Coming home…

…after eight months of life as a rehab resident

The prospect of having Bobbi at home with me was wonderful; although, I had no idea how much work lay ahead. We needed to make the house safe and comfortable…installing grab bars, mobility aids, lowering items so she could reach them, establishing structure and routines which are critical for successful rehab. We had to make arrangements for meds, establish new provider relationship, make appointments to establish baselines, organize the entire home-health care component, and figure out how to go to the store and other places, since 20 minutes to a half-hour out was exhausting for her.

Her NPH resulted in the need for hydrocortisone and before long her clothes were no longer fitting due to steroid use. I took as much time off work as I could, but still much remained. My sister came for two weeks to help with the countless details. Following that my daughter-in-law came for two more weeks to continue helping. I could not have made the transition from post acute to home without them. Finally there came the decision of how to provide care while I returned to work. We looked at home-care agencies. They were fine but lacked continuity and that all-important structure and routine. Plus the service is costly…about $3,000 to $4,000 a month. We decided to look for a caregiver using help-wanted ads and web sites devoted to finding caregivers. My sister, Bobbi and I interviewed nine possible caregivers quickly learning that candidates were not always what they at first seemed.

I hired a private eye to do background checks and found candidates who had extensive criminal records including assault and battery convictions. On the tenth try we found a wonderful caregiver with extensive experience who is also well-known among the various providers in the rehab community. Again great good fortune. The challenges now are learning who this new person is, this person I fell in love with so long ago and who now has become someone else with different interests, plus an array of profound challenges.

And what about tomorrow? There is clear reason for hope and the expectation that we will adapt. Afterall adaptation is the cornerstone to our survival now and through the ages Let us hear about your experiences. Best

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