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I spent Monday, Tuesday, and part of Wednesday this week in Salt Lake City. I had gone to Salt Lake because my brother Rob is there in a nursing home with Traumatic Brain Injury, and they had asked me to come out for a consultation.

Rob had been hit by a car in a pedestrian / vehicle accident last July, and was in a coma until the end of September, first at LDS Hospital in Salt Lake City, and then at Wasatch Valley Rehab, where he was moved to from the hospital while still in the coma.

He came out of the coma in early to mid September, and I had gone up to Salt Lake in October to visit and see the facility he was in at the time. Wasatch Valley Rehab was a nice enough place for a nursing home, but, as with most nursing homes, it is geared more for elderly patients and people with Alzheimer’s. Rob's younger age and condition did not make him an ideal fit for that facility.

While I was at Wasatch Valley Rehab last October, Dr. Carol Baraldi, the staff physician, insisted that Rob could get the treatment he needed there, and that I should leave him in their care. That was Friday afternoon. So I was very upset when Dave, the Social Director, called me on my cell phone Monday afternoon, while I was still on the road driving home, urgently requesting that I move him to another facility. The reason Dave gave was security: Rob kept trying to walk out the door. That was because he would become severely agitated and hyper-active, and when he did, he would usually try to escape. Such behavior is common in TBI patients, but Wasatch Valley Rehab was not able to provide proper security. Instead, they preferred to keep him drugged on Haldol so he would not run away. During my visit, I insisted that they not use the Haldol. A chemical restraint like Haldol is not a good thing if you are recovering from a Traumatic Brain Injury. In fact, it is never a good thing, but is often used in nursing homes. Since he was no longer drugged, it became impossible for them to control him, and they knew that.

I had talked to a lot of people during my October visit to Utah, including staff members of the Brain Injury Association of Utah. They all recommended Infinia at Granite Hills as the only place in Utah that specializes in TBI patients. So, when Wasatch Valley Rehab recommended that I authorize for Rob to be moved to Granite Hills, I did so at once. That is where he is now.

Rob has been at Infinia at Granite Hills for seven months now. So far, his stay has been just fine. The staff seem very nice on the phone, and Rob seems to be improving, if only slowly. So when, Wednesday last week, I received a call from Lynne, the night nurse, informing me that Rob had just tried to climb the fence again, I was not prepared for the news.

Rob had already jumped the fence once before, the night Elizabeth Smart had been found, and Lynne was understandably upset on the phone. But I was getting ready to leave home the next morning to drive to a meeting in Kansas City, and did not want to deal with this now. In fact, I did not want to deal with it at all.

"You need to put him in a more secure place," Lynne said rather abruptly. "I have already prepared an authorization to send him to Ogden tonight. We have a facility up there. It has a higher fence, and he won’t be able to climb out there."

"I don’t want to made a decision on the spur of the moment," I told her. "Let me talk to someone during the day and get another opinion on this." She was not amused.

The next day, I made my drive from Dallas to Kansas City, at the same time formulating plans for a trip to Utah from Kansas on Sunday if it actually came down to that. At least, I thought, If I am already in Kansas City, I am already a few miles down the road. I got in late, and stayed with my friend Jackie as planned.

Friday morning, before the meeting, I found some time to call back to the nursing home in Salt Lake City. I got Robyn, the day nurse, on the phone.

"What’s this about moving Rob to Ogden?" I asked her. "Do you know about this?"

"Well, Ed," Robyn said, "we all think Lynne overreacted on this one. The other night when she called you, she was acting on her own. No one else on our staff knew about it until the next day."

"Well, should I plan to move him to Ogden?" I asked. "If so, I can drive out and take a look at the Ogden facility. I don’t want you to move him before I get to take a look." She agreed that I should come on out.

So, after my meeting in Kansas City on Friday and Saturday, I headed west on I-80 on Sunday morning. It is 1,100 miles from Kansas City through Nebraska and Wyoming to Salt Lake City, and Jackie insisted I could make it in one long day. She was wrong about that one, but fortunately, she had a washing machine, so I had enough fresh underwear and shirts to last a few more days on the road.

I got to Salt Lake City late Monday afternoon, after a long day’s drive along the Platt River in Nebraska and an over night stay at the Day’s Inn in Laramie, Wyoming. In Utah, I stayed with Carol, Rob’s ex-wife, and their daughter, Brittney, at their home in West Jordan, UT. Carol has also adopted two young girls, Anastasia from Ukraine, and Christine, from Romania, and has her elderly mom and dad, Ruth and Fred, living in the house. During my stay, I made several visits to Infinia at Granite Hills to visit Rob, to take a look at the various nursing home facilities, and in general to see how he is doing.

Infinia at Granite Hills is not the nicest place in the world. But it is not that bad either. It is a typical one level red brick nursing home, built in a large rectangle around two small courtyards. There are nurses stations on either end. The linoleum tile on the floors is white with blue and silver flakes, slightly battered from too many wheel chairs and rolling carts, and the walls, with the usual hand rails, are painted a neutral beige color. There is a dining room and kitchen in the small basement, accessible by elevator. The rooms are plain but functional. Each room has its own toilet. The small, fenced in courtyard out back is a pleasant place where patients can go to get out doors, sit, visit and enjoy the weather, or even to smoke. The fence in this courtyard is the one Rob has been climbing over. It is just a chain link fence with a locked gate, about 6 feet tall. He wants to leap over when no one is watching. He has been successful once. Since then, they’ve kept a close watch on where he is at all times.

The staff at Granite Hills are caring and understand brain injury. They have been very helpful with me, making sure all the necessary paperwork has been properly filled out, and are very interested in Rob's welfare. That is something you cannot fake.

Rob is coming along pretty well, and is a lot better than he might be at this point, nine months after his injury last July. But he still has a long way to go. He gets up every day, gets dressed, and wanders around the halls. He can feed himself, and do his necessary toilet activities. He can wash and shave himself. He looks good, has lost a lot of weight, and is now at a pretty ideal weight for his build. He is strong as an ox, and can be hard to control physically when he does not want to do something or tries to get out. But, sadly, his cognitive ability is just not there. This is where the main thrust of his care needs to be and where things could be improved.

When I arrived at Granite Hills on Monday afternoon for my first visit, I sat down for a meeting with Rob and the staff. Carma Nelson, the Social Rehabilitation Director, came straight to the point.

"We do not want to move Rob at this time," she said. "We think he can get the care and security he needs right here."

I had heard this one before, from Wasatch Valley Rehab, so was understandably dubious. "I feel the same way," I said. "But I am still going to drive up to Ogden tomorrow to take a look, in case it comes down to that."

Then I turned to Rob. "Do you want to stay here?" I asked.

"Yes," he said weakly.

I could see that look on his face. It said, I think you are getting ready to boss me.

"If you stay here, will you stop trying to jump over the fence?" I asked. I was bossing him.

"Yes," he said. But his eyes said no. I assumed they would. Rob had been a confirmed fence jumper as a kid. He always jumped out the window and shimmied down the tree whenever Dad sent him to his room, which was often. He was not about to change now.

"Ok," I said. "I believe you." I had no other choice.

While I was in SLC this week, I was able to take Rob out in the car on three separate occasions. He really loved the chance to get out. The first drive was Monday afternoon. It was late in the afternoon, just after his dinner. We just drove around the city for about an hour, going downtown by Temple Square and the state capitol. I thought familiar places might trigger some memories. But after about an hour, he said, "I guess you can let me out here." I think he thought I had just offered him a ride. So I said, "No, I will take you home," and he sat still until I got him back to the nursing home. I made sure the seat belt was fastened at all times, and as he had not learned how to undo it, he was quite secure in the seat.

Tuesday morning, I picked him up again right after his breakfast. He was all dressed and ready to go, so we got in the car and drove up to Ogden. I wanted to go there just to look at the Infinia at Ogden nursing home. After the successful drive the night before, I decided to take Rob with me.

It is slightly less than an hour up to Ogden from SLC, and Rob sat quietly in the front seat the whole time, just taking in the road and the traffic. It was rainy, and I wanted to be especially careful driving so that I did not encounter any traffic situations. As we drove, we listed to the classical music station, KBYU-FM, out of Provo. I like to listen to classical music in the car, and rarely listen to popular music I asked Rob how he liked the music. "It is very beautiful," he said. I asked if he would rather listen to something else, and he said, "No, I like the music. It makes me feel good. It is spiritual."

I was able to find the Infinia at Ogden facility quite easily. When we got there, Rob got out of the car with me and we went in to look around. But it was raining pretty hard, and without an umbrella, we really had to hustle not to get wet as we ran from the car to the front door of the nursing home. A very nice lady, Tonya Littlefield, greeted us at the door. She knew we were coming, and was quite gracious as she showed us around.

Infinia at Ogden is very nice, with wide halls, carpets, and pleasant but older furniture, in sort of a 70's aqua color with artificial flowers. It is a bit old and tattered, but clean and spacious. I asked to see the secure area, in case we needed to move Rob here. It, too, was very nice, with a big but empty dayroom area, and had some empty beds.. But the white wooden fence out by the garden was just the height of an average man, and I told Tonya that I could have easily climbed over it myself, and so could Rob, if he put his mind to it. He is very good at that sort of thing.

As our short visit came to an end, I asked Rob if he liked the facility, and he said, "It is very beautiful." Beautiful seems to be one of his favorite words. I then asked if he would like to live here, and he said, "No." So I asked if he would rather stay where he is, and he said, "Yes." The drive back to Salt Lake City in the rain was uneventful. We got back about 11:30, just in time for lunch, where I left him.

That evening, I came back with Brittney, Anastasia and Christine for an after school visit. It was the only chance I had to take the girls in, what with their school and my travel schedule. Brittney especially wanted a visit with her Dad while I was still in town.

Before going down to the nursing home, we ate dinner together at Wendy's, and the girls thought it was a big treat. It was just the four of us, since Carol, their mom, was still at work, and Ruth and Fred, Carol's elderly parents, did not want to come along.

When we got to Granite Hills about 7:00 pm, I asked the nurse how Rob was doing. I did not know her name as I had not seen her before.

"He’s asleep," she said.

"Really?" I said. "I was sure he would still be awake this early. Is that normal?"

"You really wore him out this morning," she said. "That is a lot of activity he is not used to."

"Is that a good thing?" I asked

"Oh, yes," she replied. "Any stimulation you can give him is good. But his brain is now trying to process all the new information. Plus, he sleeps a lot sometimes. TBI patients sleep a lot."

We asked the nurse to wake him up, and he did wake up for just a minute. I said to him, "Look, Rob. Here are Brittney and Anastasia and Christine. Do you know who this is?"

Yes," he said, "It is my girls. They are very beautiful."

Then he turned to Brittney and said, "I love you, Brittney," with a big grin on his face. We were all touched.

"Do you remember our trip to Ogden this morning?" I asked.

"Yes," he said. "It was a lot of fun. I want to go out again. But I am very tired now. I want to sleep." So we left. But before we left, I was able to get a picture of him with the girls with my digital camera.

Wednesday morning was the day I needed to leave to go back home to Dallas. By now, I had been away from home for six days, and I was sure things were piling up back home. But I decided to come in one more time and have another short car trip for Rob before I headed out of town. I got to Granite Hills again about 8:30, just after breakfast. They were not expecting me this time, but when I asked if Rob could go out on a short car trip, and could they get him ready, the nurse said, "Oh, he is already dressed and ready to go. You can take him whenever you want." I was pleased to know there was a regular routine of getting dressed in the morning, and they were not just putting on a show for me.

This time, it was just a short trip around town in the car. Yesterday’s rain had moved on, and it was now bright and sunny. The snow dusting the mountains from the previous day’s flurries was brilliant and the air was crisp. Rob was again excited to get in the car. He seems to love to get out and drive around. Again, we just drove around and looked at things and listened to KBYU on the radio. Once more, he said he liked the music.

I decided we needed something to drink, so we stopped at 7-Eleven to get some juice. Rob got out of the car and went in with me. I wanted to make sure I had my eye on him. Besides, I wanted to see how well he would do in the store. He made a bee-line to the drink case, and said he wanted a Sprite. But the nurse had told me no carbonated drinks, so I suggested Apple Juice, instead. We got the juice, and he helped me put it in a covered cup with a straw to take in the car. As we drove, he sipped the juice, and finished the whole cup.

"How does your juice taste?" I asked.

"It is a miracle," he said. "This juice is a wonderful flavor. I like it very much."

As we drove on the Belt Way, I-215, I pointed to a car in front of us and asked, "What color is that car?"

"Yellow," he replied.

"No," I said, "I think it is red."

"Yes, that's right. Red."

He knows colors, but not always the right one. As in many things that come in categories, he will just pick the first word out of the category that comes to mind, in this case, yellow. But when presented with the right choice, he quickly agrees. It is all part of the re-learning experience.

As we drove by a mall, I pointed to a building with a large sign. "What does that sign say?" I asked.

"JC Penney's," he answered.

"Yes," I said, "that's right."

He was also able to read the Mervyns sign.

I decided that maybe we should get out and walk around the mall a bit, so we pulled in. But as we entered the mall, he got very nervous. The music and the bustle made him uncomfortable, I think. I asked if he wanted to walk around and look at the stores, but he turned to me and said, "Poopy." I got the idea right away.

"Can you hold it until we get home?" I asked.

"Yes," he replied, so we headed home up State Street to 33^rd South, and turned right for the few blocks to Granite Hills, so he could take care of business.

We were gone an hour. That is where I left him as I headed back to Dallas.

I had a nice visit with Pamela Hart on Tuesday afternoon after my drive to Ogden. Pamela was a girl friend of Rob at the time of his accident last fall, and was the first person who was notified when he was involved in the accident. Since then, she has stayed very involved in Rob's day to day well being, and often visits him at the nursing home, sometimes nearly every day. Unfortunately, the information she sends to the family via e-mail posts and on her website devoted to Rob are often inaccurate, more reflecting her personal feelings rather than simple observation. At one point, she even accused the nursing home of trying to starve him, because he had lost weight because of a feeding tube which had been installed while he was in LDS Hospital last summer. The feeding tube had been installed because he could not take food or drink by mouth or swallow reliably. Such devices are routinely installed in comatose patients, and are eventually removed when the patient can eat and drink on his own. Patients usually loose weight while on a feeding tube, and, as in Rob’s case, gain it back when they begin to eat normally.

Since Pamela is very obsessive about Rob, and thinks only of her own rather "romantic" feelings about him, she feels that the main reason that he is not getting better faster is that he is not getting the proper care he needs from the nursing home. She also seems to feel that our family has abandoned him in Salt Lake City, because we have not tried to move him back to South Carolina to be closer to his mom and his brothers and sisters.

The staff at the nursing home complain that Pamela is more trouble to them in her obsessive complaining than Rob himself is, and that they do not have the time to be a counselor to her, especially since she is not a family member. Furthermore, her visits often agitate and upset him.

I have been out to Salt Lake City three times now, and each time have made a point of visiting with Pamela. Last October, I even invited her to attend a convention on Traumatic Brain Injury in Provo with me, and paid for her registration. My hope was that she would get a better understanding of the nature of Rob's condition, and learn some ways to help him get better. Unfortunately, it did not happen this way. Instead, Pamela uses what little information she learned at the conference to bolster her optimism for a speedy recovery and to manipulate the nursing home staff.

Pamela and I ate lunch together at a very good Mexican restaurant called Tres Hombres. Pamela has been extremely helpful in the last several months, visiting Rob on a regular basis, sometimes every day. I do not think she realizes how much I appreciate her interest in Rob's well being. But Pamela thinks her romantic interest in Rob makes her "family," and she wants to be treated as such. Lately, though, the staff at Granite Hills has asked her to pull back on her visits, because her presence often agitates and upsets him. I was sorry to have to tell her that, because of new HIPPA regulations on patient privacy and the disclosure of medical information, medical decisions about his care had to go though me as his Legal Guardian or though the family. She cried a bit when I told her my decision. But it is just a reality, because of my responsibility as legal guardian, for me to be the main point of contact. In any case, Pamela has an opportunity to help with Rob's long term recovery if she chooses, and I still hope she might want to be part of that.

Carma Nelson, the Social Director at Granite Hills, told me that they have just enrolled Rob in a new Speech-Language therapy program that will get him out of the building two times a week; the change of scenery alone will be a good thing. I am not sure when this program will start, but if he does start it, he will actually have "home work" to do. It would be wonderful if Pamela could become interested in helping Rob with his home work when it starts, or just spend some time working on reading or playing with flash cards.

As you can see from this simple story, Rob is coming along. He is getting better. I just wish I could be there on a regular basis to help him recover. I think regular visits from someone he knows would be a big help. But his daughter, Brittney, is too young to drive, and between Carol's work schedule and the kid's school schedule, it is not easy for them to get in there very often. Plus, Carol has said that Rob gets agitated when they come to visit. I suspect that is more his reaction to Carol, as his ex-wife, than to anything else. It is hard to tell people these things.

At this point, I am optimistic about Rob and his continuing recovery. He is not yet a year out from his injury and significant improvement can continue for up to two years. Plus, I expect to see faster improvement when he starts the Speech-Language therapy. I am glad Carma Nelson thinks he is now ready for that, and I am excited.