Tag Archives: TBI and hope

TBI:Lost in November

Terry Chapter 6 and 7 Beginning of November

Or Chapter 30 and 40–who knows at this point…. At any rate, I believe I left off at a point where I was just about to explode at the lack of aid and assistance available to brain injured people and their families. These are not regular mental cases. These are physical insults to the brain which leave a wide track of devastation through the brain and the family of the brain. For some peculiar reason the medical community and the mental health community in Washington are unable to figure out how to help brain injured folks beyond in home visits of therapists. The only other alternative seems to be a warehouse–nursing home, Alzheimer’s unit etc. All facilities designed for people that are not expected to recover or be supported in getting better or returning to something approaching normal.

I think the problem lies in the political process that funds care for  TBI people. If you can’t see the injury and buy a band aid or get an operation are you really injured? It doesn’t help both the caregiver and medical communities to deal with such untracked and unchartable territory as the brain either. Remember that old ad, “A brain is a terrible thing to waste?”  Yes, it’s a waste but very few people know how to rescue one.

The shower is almost but not quite finished. We finally had a bath thanks to friends, Gary and his wife Judy, who invited us over to take a shower at their house and treated us like visiting royalty instead of the showerless grubbies we really were. I thought we would never be able to pry Torin out of the tub. Our shower tiling was finally DONE last night at 3:30 a.m. and the shower project from hell is now waiting for the wonderful guys from the city of Lacey to come over and help me hook up the parts that water comes out of. I may get a shower tonight after two weeks and two borrowed showers. I am sick of cat baths in the sink and so are Terry and Torin.

The shower really did turn out nicely but I will never tile anything that big again in my life and do it artistically with mosaic set into it. What was I thinking???? Obviously I wasn’t…but it’s done and if water will come out of it and my shower curtain rod gets put back up I will sit in there until the water heater runs out of hot water. I will probably have to fight off my dear friend Sherry though–she has been staying with me to care for Terry and in the thick of the grouting goo for three days. It’s been frustrating for us both because with Terry watching you have to do what you can when you can. Of course it didn’t help when I didn’t buy enough grout and when I got more I got the wrong color, meaning planning another trip to the store with Terry in tow.

And about our week after the last missive I sent to all–let me just say things got much worse before they got better. This part of the story appears to have a happy middle of the end of the end of the middle. We are by no means at the end of the story. Tuesday (I think?) we had an appointment with Dr P., Terry’s regular general practitioner I wanted his shoulder looked at and his medication looked at and adjusted because he is still not sleeping well from 2-4 a.m., which is about the time I finally make it to bed so I am really tired because I’m back up rubbing his back, his feet, following him around etc.

This bizarre late night wandering and restlessness is not uncommon in brain trauma but it does lead to things like unwatched people drinking the liquid hand soap in the night. After the Tuesday night wandering episode Terry was spitting and cussing and saying the water in the bathroom was terrible, it tasted awful and I assumed he was having another one of those issues with reality not being quite there for him. He came back to bed and was still making the kind of noises anyone would make after ingesting 1/4 cup of soap. We finally got up and I got him a nice fresh glass of water and figured out the soap sipping incident. I helped him rinse his mouth out again and we finally settled down. He did not require a laxative the following day.

I digress, back to Dr. P; we arrived in his office for our appointment in the afternoon and sat around in the waiting room with me falling asleep sitting up until they put us in a room. This room had no windows and it was the size of a large closet. We were left there–for one hour and 15 minutes. I sat on the first of a series of hard plastic chairs that began to appear in my life.  TBI patients are restless anyway and Terry was crawling up the walls after 15 minutes, his back and shoulder were hurting and no doctor in sight. Finally, about the time I was ready to leave and leaking smoke from my ears he blew into the room. Seems he had heard the story from Terry’s and his mutual good friend Rod.  I just filled in some details, explained we needed help to find somewhere that could help Terry and give him a quieter environment. I said we were looking at adult care facilities and he said Terry should be in his facility. He is the medical director at a rehab center here in town. I told him we had applied there and after two days of dithering we were turned down and I was very disappointed. He said, “No problem,” and dashed out to make a phone call, came back and told me Terry will be admitted tomorrow. He was really impressed at Terry’s remarkable progress in just five weeks and actually said in two months they’d get him back to where he was before.  I remarked on how refreshing that was to hear and how grateful we were for his help. I asked if we needed to look at his meds or his shoulder and the doctor told me not to bother, he’d do a complete evaluation the next day. I was walking on air when I left.   Sherry was waiting for us in the car   and I told her what had transpired. She is a retired social worker and she’s been doing legwork to help us find a place for Terry. We were both relieved and happy as we headed home.

The call never came. Around 2 p.m. the next day I called the facility and was handed around until I got passed to a guy named Dan who told me he and Dr P. had decided Terry was not appropriate for their facility. I was devastated and MAD. These people had not had the courtesy to even tell me he was not going to be admitted. I did not get any medical care for Terry and I’ll bet they think they are going to charge me for this mess—I think what this doctor said and did was unforgiveable. Not malpractice perhaps, but arrogant cruelty certainly. Back to square one with poor old Terry. And no looking at his shoulder or his medication either—I called the doctor’s office and was left on hold for ten minutes before I gave up.

We spent the entire next day calling and talking and hunting for a facility or home that would be good for him for a month or two of quiet rest away from the bustle and stress of a family. Terry cannot handle noise or stress or too many people or any kind of over-stimulation. We have a dog, a teenager and two cats. Time keeps moving forward for all of us and I don’t know how to stop the world and make our situation work for Terry.  I am trying to buy time. I am told again and again that it is time that is needed, time for him to recover, rest and recuperate. I still think he desperately needs his therapy too, and I want to find someplace that is not a warehouse for the wounded.

No one is prepared for brain trauma walkers who might just stroll away. One place in Centralia would take him and it sounded good so we visited it that evening. It was a cousin to the HP Lovecraft Motel –only this had to be the Barbara Cartland Nursing Home. For those not in the know, Barbara Cartland was an ancient lady who wrote romance novels that introduced the genre to America.  This place was really clean, smelled great and just about killed my fashionista son on impact. The walls were painted a mélange of colors including mustard yellow, and an indescribable green that is close to the color of copper ore–turquoise but not really, just overpowering next to the yellow. The dining area and television lounge area were pureed flamingo pink and the halls were a paler shade of the same. Every surface had heartwarming Victorian trinkets on it, flowers, feathers, more silk flowers and sappy statuary, really bad art and wallpaper borders completed the picture.

I know the little old ladies wheeling around hunched over in their chairs probably loved it and it made them feel very comfortable, but it felt like I had been locked in my grandma’s bedroom in 1976 and never let out. I was reading their calendar posted in the hall while we waited for the owner to give us a “tour” and I thought it was probably the wrong place when I saw the calendar set aside time everyday for “group reminiscing”.  Can you picture Terry in the midst of 17 frail little old ladies and a sprinkling of even older gentlemen talking about the old days? They also have kickball as an activity….quoi? I figured it had to be a sturdy game of wheelchair football and was trying to imagine picking the teams.

Terry is a wanderer at night and I didn’t think the tiny toothless female aide (not aged—toothless more like descendant from a Virginia mountain woman) could handle him when he strolled into Mavis Fenster’s room at 2:00 a.m. trying to find the bathroom and peed in her clothes hamper. He is getting better but still has issues with relocating himself in space and time and he’s usually pretty bare when he sleeps. The whole situation was a heart attack waiting to happen so we excused ourselves and went home.

Terry had gone with us because we wanted to gauge his reaction to the place. He made us talk in the car about being out of our “safe zone” before we went in to examine the place. Although that made no sense, in translation it meant he was not happy to be there.

We got home and started to go into the house when Terry kissed me good bye and asked me to give him the keys to the car because he had to go home. I tried to explain he was home but he was adamant about going home. We stood on the deck and talked and he said he “Lived in Tacoma with his ex wife” and to stop playing around. Of course he thought ten minutes later he lived in Seattle with some firefighters and the address was two blocks over, but he couldn’t remember the street name. While he was distracted Sherry and Torin scooted around and padlocked the front and back gates, which we had had the foresight to prepare for just such an event. He was mighty upset that he couldn’t get out of the yard and walk home to Lake Louise. He tried to leave by both gates. He started to climb over the front gate with a cast on his arm and that’s when I called the police. I finally coaxed him back inside because he said he was cold. I asked him whose clothes were in the closet and he said his but he had just brought them over. He lay on the bed and refused to speak to me because I was holding him hostage. That’s about when Officer Cook showed up. What a great guy. He talked to Terry and they discussed mutual acquaintances in the fire department and Terry said he would go with Officer Cook to the hospital so he could sleep. They left in the officer’s car; I burst into tears and had half a beer.

Of course that’s when the phone rang and it was Officer Cook. I was being called to the hospital. I suppose as a sort of translator? Again the curtained cubicle, Terry left abandoned for the most part. The ER doc was short, (literally) sharp and to the point and he was gone from our cubicle within a few minutes. They did a CT scan and Terry’s head appeared to be medically normal. After he escaped in his little gown and scooted down the hall with his buttocks twinkling, a nurse caught him and brought him back. He was dosed with Percocet and Attavan and left pacing the cubicle and in a sweat rocking and moaning. Personally? I think he was in the middle of a huge panic attack. Percocet is not what a TBI needs and he was very distressed for more than two hours.

At 12:30 a.m. a nurse came and escorted us down the hall to the psych ward. That was fun. I spent the night in the psych unit. I always wondered what that was like and now I know. They put Terry and me in a room with two overhead lights and a window-like portal in the wall. The furniture was a wooden box with places for restraints on the side. That was the bed and the mattress was about as thick and comfortable as a sweat sock. Terry referred to the one thin blanket as a tablecloth. I left him for a few minutes to do the intake paperwork and I had some vague hopes that mental health workers might be able to us find a place for him as I had been trying to get capable help for nine days with no luck.

After filling out a batch of paperwork, I was escorted back to the unit, noticing no doorknob on the inside, and given a hard plastic pink chair to sleep in. Terry was both miserable and wound up. He couldn’t sleep it was too bright. I gave him my sunglasses no one had taken away my purse. Then he couldn’t sleep because his back hurt and he had a headache. I discovered that a really strong peppermint Chap Stick makes great emergency back liniment for a rubdown. Afterwards you can wave your hands under the person’s nose for their headache, dispensing peppermint fumes (MacGyver eat your heart out).

We settled back until 3:30 a.m. when the psych worker came to get me and tell me I could leave. The weird thing about the whole experience is how depressingly ordinary it was. I have a kink in my back roughly the size of Cleveland from the plastic chairs and tiling all hours of the last few nights. Terry was sound asleep when I left him in the loony bin.

I got home at 4 a.m. and up at 6 a.m. to get Torin to his morning club meeting at school. I drove home and picked up the phone. Penny, Terry’s sister had given me the name and number of one of her college faculty who specializes in helping TBIs and he was willing to talk to me. I called him and he set up a meeting–in Grapeview–90 minutes later. I rousted Sherry out, gave her a cup of coffee and we headed to Grapeview to meet Dr. Joseph Moisan.

He is now my official hero. He is a private case manager with credentials and a pedigree which is also the size of Cleveland, the suburbs and the surrounding county. His son was a TBI when he was only two and a half years old. Dr. Moisan says his son taught him everything he knows–and now he puts that to good use helping others. We were in his office for almost 8 hours and his wife Judy made us mercy tuna fish sandwiches in the middle of all of it. He cut through more paperwork and crap in that one day than I have been able to do in all the days since the accident.

We are now on the event horizon for a social security disability hearing next week. We got the approval for a neuropsychological consultation which is necessary to let the doctors know where in Terry’s brain the injury took place, possibly how severe it was and how he is recovering and can recover. Again–the brain is a marvelous thing and we are all dancing in the dark here. Well, the neuropsych guy is dancing in a candle lit room but it’s still not 100% clear when you are dealing with a brain. Dr. Moisan knows all the facilities in the country and he has found the best one closest to us in Bakersfield, CA. This place holds promise for bringing Terry back and I am holding on to the belief that Dr M. can help make this happen for us. I watched him go through insurance companies’ hurdles like an Olympian athlete. It was a $1000 to retain the doctor’s services but worth it at twice the price because he knows his stuff and their stuff and how to make them all do the other stuff.

Sherry is going home to Oklahoma next week; I think we wore her out. My brother is flying in Friday night to be my new overnight helper for two more weeks and I think if we are not seeing daylight yet we may at least be seeing the nightlight enough to read the clock.

I’m off to fetch Terry home from his vacation in the psych unit, more later.

heading home in the snowhed

Heroes

http://fromcheaptherapy.wordpress.com/2011/11/15/heroes/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+LisasCheapTherapyBlog+%28Lisa%27s+Cheap+Therapy+Blog%29

This very lonnnggg link leads to my blog friend’s Lisa great blog.  This week in her ‘experimental year’ of blog entries, she talked about heroes. I love her blog because she invites us in and she invites us to share. She makes me think and I like that. I like electronic conversations, I’m sure no one knows that about me…right. I never shut up in person or on paper and this has turned into the Great American Novel. Good thing I’m married to a good listener.

Terry at Glacier, one of our marvelous motorcyle trips. This is the Terry I married

My good listener husband is my own hero. We have been through so much together in our almost ten years. The plan we had for our lives when we got married didn’t work out in the end. It all changed when he clobbered a buck doing sixty uphill at night in Montana on his motorcyle.

The last picture in Terry's camera before the accident. He and his riding buddy Don, another one of my heroes, clowning around

Like Gabby Giffords, Terry suffered a severe traumatic brain injury, TBI in the common parlance these days. We watched the Diane Sawyer hosted show with Gabby and her husband Mark a few nights ago. It was hard for Terry to watch, it made us both cry. It brought back so many tough memories. Terry remembers very little of the early days after his accident but I kept a journal down the whole road back, for which I am eternally grateful because memory can change when you revisit it.

Finally conscious, he knows me, but that's about all. Trach tube out, IV tubes out.

It does get better. Torin took this picture of us all three years after. Son Corey in the middle and son Joel on the right at the annual Christmas Toy Run for Charity.

My friend Faye is a hero to me. She dropped everything and jumped in the car and drove to Montana with me to be with Terry for those first terrible days in the ICU in Billings when we didn’t know if he would live or be conscious again. My son Corey is a hero too. He rode his motorcyle out to Montana in October, just beating the snow, to be with me after Faye had to leave. He also stepped in when I needed him desperately to care for my son Torin who was only 14 at the time. I was in Bakersfield and Torin was alone because of an issue with Terry’s family. Corey gave up two weeks with his own kids to take care of his little brother and our house.

Torin is my hero too. He stepped up and tried to become a man at the age of 14, taking on cooking and cleaning and helping mind Terry and keeping me in one piece. He understood there was no time or energy for him. The accident ended his childhood forever.

The intensive care unit nurses and doctors in the hospital in Billings, Montana are my heroes. How do they do that day after day? The ICU is not a place that has good outcomes in many, many cases. They see people in life threatening and life ending situations and they get up every day and go to work with positive attitudes.

Coming home. The air nurses who flew us home were the same ones who picked up Terry after the accident to Life Flight him to Billings. They didn't think he would make it. You can see the pressure drainage holes on his head and where they lifted his skull off, we call it his divot.

I still want to write a book about what its like for families facing the aftermath of TBI and I’m working on it, in between all the other things I juggle on a daily basis. Don’t get me wrong, I was born to juggle, and it will get finished because the story is important to tell if it will help others  in the same leaky boat with their injured loved one.

We had in home therapy but it wasn't nearly enough.

Why is Terry my hero? Because he fought so hard to get back to us. When he was hurt he lost his short term memory and his ability to do things like count money or write his name or know when a pot of water was boiling. He was an athlete whose balance was gone and now he had to learn to walk again, he fell down a lot.

At home with us, he truly thought the laundry hamper was the toilet and he drank soap and put on my clothes thinking they were his. He broke his arm and his neck and all his ribs and punctured both lungs in the crash, physically and mentally he was a wreck.When he came home from the local hospital rehab center, he was physically on the mend but he thought we were keeping him prisoner, the mental issues were just getting into full swing.

Terry waves to me on the way to Bakersfield. One hour after this, he had a complete meltdown and lost track of reality again.

Another one of my heroes is Dr Joe Moisan, Terry’s ombudsman. We found Dr Joe by a miracle and he cut through red tape like he owned Arthur’s sword. Dr Joe was diagnosed with a blood disease and retired before Terry got a chance to meet him and know him, which makes me really sad. Because of Dr Joe, Terry got  a chance to get better. He was accepted into the Centre for Neuroskills in Bakersfield although he was a little past their upper limit in age.

The staff at the Centre are my heroes. They deal with with TBI patients 24-7-365 with both a residential and treatment focus.   Some patients will get better, some will live there forever. TBI is a terrible thing and its effects are wide ranging and the severity is different in every case. The only potential cure is hours and hours of one-on-one therapy and no one knows how far any one person can get. Their goal is to return the patients to independent living which means learning to shower, get dressed, cook food, all the things we take for granted have to be relearned in many cases.

TBI results in some pretty strange crazy. Terry was in many  ways a really big three year old, no ability to judge, no ability to make decisions or even actually see what was real and what wasn’t.  The people who work with TBI patients have infinite patience and watch over these people like guardian angels every second of every day.

Terry went to Bakersfield in November and got into intensive therapy. He didn’t know where he was at first and he kept trying to unscrew the window screens and escape. He thought Bakersfield was Olympia and he was trying to get home to Bellingham. Terry has never lived in Bellingham.

He had a breakthrough in December that he remembers, he called me on his little green Migo phone (for small kids only dials a few numbers) to tell me he couldn’t understand how he thought he was in Olympia because it was obviously Bakersfield out there and the doctors were there to help him because he was hurt.

I took this on Terry's first furlough after three months at the Centre for Neuroskills. Terry was back.

From that breakthrough Terry took off like a rocket. No one has ever worked harder to get better. The doctors told me in our weekly call that he was the most focused and dedicated patient they had ever seen. I remember being afraid to visit him. Would he still be that sad-eyed blank-faced person I had delivered to the Centre?  When I rang his doorbell for that first visit to his apartment at the Center in January, Terry answered the door. It was Terry, I could see it in his eyes, he was back. His strange roommates and their minders were so happy for him, that’s a moment I won’t ever forget to be grateful for.

Terry and John Neff the day before we headed to Bakersfield. We lost John to canceer a few months ago. I will be eternally grateful for everything he did for me. He was Terry's boss.

Here at home, John Neff and John Hartung and Darell A. are heroes too. They didn’t have to, but they stepped in and made sure we were going to be okay. John Neff, who passed on recently, marshalled the staff from the City of Lacey to make improvements to our house so Terry could come home from the hospital. John Hartung and Darrell spearheaded a fundraising drive which helped offset the travel costs of going back and forth to Montana and to Bakersfield. I owe so many people so many thanks I could write a blog and just list names.

Terry came home from Bakersfield in April. He was different. I have said its been like being married to his twin. A little odd sometimes but he’s still Terry. We had a huge party and invited everyone who had lent a hand, we were so happy to have Terry able to hug everybody and give them his own thanks. Best party ever.

He returned to his job as Fire Inspector, thanks to John Neff who believed in him every step of the way. It was hard for him, people look at TBI people like they might go bat flap crazy any minute, or drool, or forget, fill in your preferred symptom. He knew lots of people were waiting for him to screw up and prove he couldn’t do it. He didn’t fail. He went to work every day and he felt like a leper a lot of the time but he did it. Five years later he’s still doing it. Life has gotten easier but it still has challenges. He can’t retire yet because of the financial burden of the accident, ancillary costs of my losing my job to care for him and the things you never plan for and think about. He’s tired, but he still gets up and gets it done every single day.

Terry and Meesh walk together every day

He can’t run anymore which breaks his heart, but he walks every day, sometimes twice a day. His beloved dog Meesh would not be happy without his walkies. Terry gets foggy and forgetful when he is really tired and we adjust for that now. He has lost the ability to feel emotional highs and lows in a lot of cases which has been hard for both of us. Our lives have changed, and he was depressed enough to go into therapy. He wanted old Terry back. His doctor told him old Terry was gone forever and he needed to face that and get to know new Terry.

My hero, this summer on a top down day in the Mini

He has done that. Every day is hard when you are someone you didn’t used to be.  For 60 years he was exactly who he wanted to be and now he faces a different man in the mirror every morning. Because he fought like a tiger to come back to us, and because he proved everyone who said he couldn’t do it wrong, and because he never gives up no matter what, he is my hero.