Karen DeLoria's Caregiver Story
March 7, 1992, my partner and I and our two daughters — Lori, age 12, and Danielle, age 10 — had been living in Georgia for only seven months. We had moved here for the warm climate and to be near our dearest friends, Clare and Tina, both nurses working in the area. I had found a job at the Ridgeview Institute continuing my career in psychiatric nursing and my partner was working at NCR in Peachtree City. The girls were doing well in school and we were happy.
It was a warm, sunny day when we all decided to pile into the minivan to go house-hunting for our first home. The girls were bored, so I told them to bring something to amuse themselves. Danielle ran upstairs to get her knitting while I went to lock the back door. The other adults were outside the front door when we heard an awful scream! The scream was coming from Lori, who was standing over the kneeling Danielle who was holding the end of her knitting needle close to her chin. Only 4 inches of the 14-inch tempered aluminum needle were visible. The other 10 inches were buried in her chin and angling up through her head. Dani was conscious, and the look on my baby's face was pure terror.
I eased her to the floor as my partner and my two nurse friends came running through the front door. I looked up to my friend Clare, a nursing instructor at a nearby college, and pleaded, "You've got to handle this!" She immediately went to work on Dani while I hustled Lori outside to calm her. The ambulance came within two minutes to take Danielle and me to the hospital. I later learned that the paramedics had gotten an order to sedate ME if necessary!
Danielle was taken to Cobb General Hospital where the E.R. doctor told us he was MedEvacing her to Scottish Rite Children's Hospital. He said this with tears in his eyes and he offered to drive us into Atlanta.
My other friend, Tina — another nurse who then worked at Shepherd Spinal Center — drove my van, all the while assuring us that everything would be alright. When we arrived we were met by the Chief of the Chaplains, who told us that Dani's helicopter had arrived and that their Chief of Neurosurgery had been called in and was already with her.
Dr. Roger Hudgins met with us within an hour and told us it would take a miracle for Danielle to survive the surgery because it appeared that the needle had passed through her carotid artery, and removing it would probably cause her to bleed out. Without missing a beat, Clare said, "We believe in miracles!"
Six hours later, after Danielle's father had arrived from Oklahoma and all of our friends had gathered, Dr. Hudgins came to tell us that she had survived the surgery. The needle had passed between the carotid artery and the optic nerve, nudging them apart. There was no bleeding and the Chief of Plastic Surgery had repaired the roof of her mouth. The importance of his next statement didn't register with me at the time but would prove to be a huge factor in her recovery: "She did well in surgery but we don't know what we will be facing."
Because of the damage to Danielle's gray matter, she was left with expressive aphasia (the inability to access words). She would ask for her doctor, and we would hear, "Where is my principal?" After three or four days of this struggle, she simply stopped talking. Depression had set in. It took me five days to realize that Danielle thought she was going to die. She didn't realize that the worst was over and that now she would only get better.
Dani was released from the hospital in only four weeks, left with a craniotomy scar on the left side of her head and a large scar down the left side of her neck where her carotid artery was exposed in case the need arose to clamp it. Those visible scars healed fast; the cognitive, speech, and memory skills took much longer.
We found a program in Atlanta called The Transition Program which was run on a grant from Georgia State University. It was designed to help brain-injured children "transition" from the hospital back to their regular schools. It was a godsend! Without the transition program, Dani would have needed a "rehab hospital" or outpatient rehab, neither of which was targeted for a ten-year-old child.
Despite her initial deficits, with the help of all of our friends transporting her to this program for six months, Danielle was able to join her own in fifth grade at her elementary school! Danielle is now a single mother of two beautiful children and is a junior in college, working on her teaching degree while working as a paraprofessional in the Henry County School Department.
I had spent the bulk of my nursing career in Psychiatry, a discipline that seemed to suit my personality and abilities best. In June of 1983, however, I found myself questioning whether psychiatric nursing had caused me to lose basic nursing skills like caring for incapacitated patients at the bedside. After talking with several of my nurse friends, I decided to spend a year at the Shepherd Center on one of their Spinal Cord Injury floors. With Shepherd's 10-week preceptorship program I was convinced that I would relearn everything I needed to know. My year at Shepherd proved to be the most physically and emotionally demanding and one of the most demanding of my career. I knew it would be an experience that would follow me all of my life.
As a nurse I was very focused on my career, and when I began experiencing diffuse pain in my muscles, I of course ignored it and worked even harder, but by 2000, I was no longer able to work a whole day without severe pain. I saw several doctors and was treated for "Tennis Elbow," bursitis of the shoulder, a bulging disc in my cervical spine, and various other ailments. By 2000, I was working as the Director of Nursing for Charter Midtown Hospital in Atlanta and was no longer able to ignore the pain in my upper body, and now it was beginning in my hips and knees. After much research on my own, I went to my family physician with a theory. I was convinced that I had fibromyalgia. He did not put much stock in this diagnosis but agreed to send me to a rheumatologist I had found who specialized in this disease. Once there, I was immediately diagnosed and thereafter spent 6 months in Physical Therapy to regain the muscle tone I had lost. By 2002, I was still unable to work and had to resort to Social Security Disability, which I still receive today. Over the past eight years, however, I have learned to manage my disease through scheduled rest and pain management with around-the-clock narcotics.
Then, on May 3, 2009 I received a phone call from Washington, D.C. that would change our lives once again. My eldest daughter, Lori was serving in the Peace Corps in the Dominican Republic. She had just signed up for her third year in that country and was excited about the new programs she would be working on. While riding to her boyfriend's mother's home in the country on the back of his motorcycle, they had an accident which neither of them can remember to this day. Lori was thrown into the dirt and rocks at the side of the road and, her boyfriend, Joel, was thrown in the other direction. Joel ran to her and found her choking on her own blood. He cleared her airway, made sure she was breathing, and then had to leave her to find help. A neighbor drove them to the nearest town, which had only a clinic that could not help her. Joel refused treatment for his own injuries and demanded that an ambulance take Lori to Puerta Plata, a tourist community where he knew there was a hospital that Lori trusted. Eight hours after their accident, Lori was taken to surgery for an epidural hematoma that was pressing on the left side of her brain. The surgery was successful and within, hours, Lori's Peace Corps physician, Lisette, joined her in the ICU.
Meanwhile, the Peace Corps officials in Washington, D.C. contacted me at my home and told me that there had been an accident and Lori had gone through brain surgery.
My previous experiences with Danielle's brain injury, as well as my nursing experience, had not prepared me in the least for the fear and helplessness I felt, being so far away from her. My passport had expired and we didn't have the cash to get to her. With help from a company that expedited my new passport in 24 hours, and from my brother, who handed over his credit card, I reached the Dominican Republic three days later. Lori had, by this time, been transferred to the capital of the D.R., Santo Domingo, to a hospital with the best Neuro Department the D.R. had to offer.
To complicate matters, I did not speak Spanish, and the Dominican Republic is not a country where English is spoken by its citizens. It is a poor, underdeveloped country where medical expertise is, by my experience, far inferior to the U.S. From what I was able to determine, the physicians who treated Lori, on the whole, were excellent. Most of them had been trained in the U.S., but I was immediately appalled by their lack of knowledge of safety concerns both in their physical facility and within their nursing staff. The nurses assigned to Lori's around-the-clock care were kind, well-meaning nurses, but they simply didn't have the basic training that nurses in the U.S. enjoy.
Lori was conscious but completely lacking short-term memory. I found it necessary to reorient her to where she was, who her caregivers were, and what had happened to her every 10 minutes when I first arrived. Her only other injury was a broken collarbone, and her only impediment to mobility was some slight dizziness and lack of perfect balance. This became a problem because she was experiencing a great deal of motor restlessness and had a difficult time sitting still. She was not always coherent and didn't understand why we wanted her to stay in bed. She would yell and fight with me to get up and walk, and because the majority of her caregivers spoke only Spanish, she was unable to speak to me in English. Prior to her accident, Lori had been completely bilingual and had had no trouble thinking and even dreaming in Spanish.
After pleading with her doctors to release her for days, and after pleading with the Peace Corps in Washington to get her a medical flight to the U.S., I was at my wit's end. Because Lori's condition was considered stable, the Peace Corps saw no reason to send her by medical flight and insisted we wait until she could fly on a commercial airliner. Lori was still completely disoriented and irrational; I did not see how this could work. My partner back home had contacted the Shepherd Center. Their admissions department worked tirelessly, contacting the Peace Corps in Washington and trying to explain the importance of transferring Lori by medical flight so that her rehabilitation could begin as soon as possible. At this point, Lori's Peace Corps Physician, Lisette, stepped up and volunteered to take her home flying Delta Airlines First Class direct to Atlanta. Lisette assured me that she had no trouble taking on this responsibility and that she would bring injectable medications to sedate her on the flight if necessary.
Knowing how important it was that Lori reach Shepherd, I agreed, and since I wasn't able to fly with them I scheduled a flight for the same day. I arrived at the Atlanta Airport and was met by my partner, Jan, 30 minutes before Lori's flight was due to arrive. It was the longest 30 minutes I have experienced in a long time, and by the time Lisette pushed Lori's wheelchair out of the elevator at the airport, I was shaking with relief.
We arrived at the Shepherd Center at 11:00pm on a Friday night, having previously arranged for Shepherd's Dr. Kaelin to come in on his night off to admit Lori. For the first time I was able to turn her over to people I trusted and try to sleep in 12 days. Jan, Lisette and I retired to our apartment in the Woodruff Residential Center which had already been arranged and collapsed.
Lori spent three weeks at Shepherd, starting out with round-the-clock sitters due to her total lack of impulse control and inappropriate behavior, frequently sexual in nature. At Shepherd, this behavior is expected — not shocking to the Shepherd staff — and for this I was so grateful. The nurses at Shepherd cared for her with the utmost respect and lack of judgment. They knew that the Lori they were seeing then was not the Lori she had been before the accident, and they were confident that it would not be the Lori she would end up being after her rehab was complete. Lori loved her therapists and nurses and worked harder for them than she would for us. Dr. Kaelin saw her every day and always treated her with kindness and respect. We saw incredible progress in her every day and by the time she was released to day treatment, she was able to speak clearly in both English and Spanish. She had been contacting her friends around the world daily by Facebook and her posted were beginning to make sense. She was gaining ground socially too, her conversations tending to be more appropriate, timely, and much less silly. Her problem-solving abilities were improving and all involved were confident that she was ready for day treatment at Shepherd Pathways.
Lori spent the next three months at Pathways. We continued to live at the Residence Center while my partner, Jan, went home to relieve our house sitter and care for our many dogs. One of the advantages of moving to the Pathways step in Lori's recovery was that we could now go home for the weekends. Lori had been having a difficult time with sensory input, becoming overwhelmed with too much visual and auditory input. I was very concerned about driving for over an hour on the highway, since she had always gotten carsick and this overstimulation anxiety was causing nausea also. I need not have worried; she did great her first trip home, and spending the weekend in the country seemed to calm her down immeasurably.
Upon graduation from Pathways, Lori was able to take and pass the Shepherd Driving Test; she could navigate daily life with little difficulty and was very anxious to return to the Dominican Republic. Lori was concerned that the hundreds of people that she served within the D.R. needed to see that she was alive and doing well, but her biggest concern was how much she missed the man who had saved her life. Lori and Joel had been together for more than a year and had considered marriage before her accident. Now, after being separated for 5 months, she very much needed to go back to him.
As a mother, it was very difficult to take Lori to the airport once again. I knew she was not fully recovered but I also knew that the separation from Joel was impeding that recovery. Lori did get a direct flight, and Joel arranged to be in the Capital to meet her plane. The visit lasted only two weeks because Lori still had outpatient therapy to do in our hometown. Lori and Joel wasted no time; they were married in the D.R. on September 26, 2009, just a few days before she returned home.
We have since applied for and received Joel's resident Visa, and both he and Lori are now moving into their own apartment in Doraville. Lori is continuing therapy at Pathways where she is working on taking over all of her own financial affairs and getting back to her career in international development.
In January of 2010, I completed orientation as a volunteer at the Shepherd Center and for the Brain Injury Peer Visitor Association®. I felt that as a mother of two children with brain injuries, a former employee of the Shepherd Center, and a retired psychiatric nurse, perhaps somebody was trying to tell me something. The Shepherd Center is my home also and I need to give back to those who have given so much to me.
Our latest news is that Lori and Joel had their first child in early May 2011 — exactly two years from the date of her accident!!