Tag Archives: traumatic brain injury recovery

TBI: End of October, Crabby Day

Out of Order–October 2006.

I’m so damned tired. I’m trying to finish tiling the new shower, no bath in four days except a spit bath. I have T. home now and although he’s marginally better if I turn my back he’s doing something–like dismantling the cd player to turn it off. Wandering outside to pee on my pet clematis. Why couldn’t he just whiz on the grass like a regular guy?

I find myself angry with him when he does things like a stubborn five year old. He: “Go inside I want to lock this door.” Me:”No, I need this back door unlocked so I can get to my studio.” I step through inside door and he locks it with the little button thingie although I showed him it is a double key deadbolt lock. I unlocked it as soon as he moved away and then went and got the key and really locked it. It’s hard to not get aggravated. He just takes so much attention and he demands that we turn the t.v. off and lights off etc. as soon as it gets dark. It’s hard to explain to him that we live here too and he doesn’t get to make all the rules.  Really, television is fine at 8 p.m.

He is being really rude to Torin on the verge of nastiness. Its like with the brain governor off the real Terry is showing through, well not the real Terry but a facet of him that is usually under better control. I don’t like this guy much and I fear by the time he heals I will be so finished with him I’ll want him gone. Then he turns sweet and lost and I see the man I know. I think I’m just beyond exhausted at this point.

The shower has turned into the biggest thing I ever tried to do. It’s like I never get time to quite finish it off with watching T. out of one eye at all times.  I’m hoping we qualify for some home health care under our insurance. Kicker is it has to be an LPN or RN. The folks are coming on Thursday to assess him. I have to have time to work and it is not happening for me now. My boss is wonderful but I’m starting to worry–and Terry doesn’t respond well to some people like S. and H. He just turns into a total ass around them and although H. will happily help we can’t really use her because he can’t stand her.

I’m selfishly happy to have him home though, because now people like his vampiric ex wife  and ex-friends can’t show up to dine on our grief and pain. It really annoyed me that these people who were completely nasty, evil and rude to Terry when he and She split up suddenly are just dying to seem like they give a shit. Give me a break–and his parents just driving up and dropping in on him was hard. They didn’t bother to call me and check on his schedule first. This has been not good, he gets really upset and overwhelmed so no more just dropping in to confuse and upset him. I think Terry was better today because he was not being overstimulated with a bazillion people. He actually remembered for a few minutes that he lived in Olympia and that he crashed his back. He knows something is missing and he is in a lot of pain. Positive signs but hard for me to deal with. My humor is in short supply today.

I’d like to drink or smoke or maybe both. Running down the street screaming might be nice too, but I need to keep my act together. This poor old journal will be hearing me vent and the emails sent to update folks will have the nice parts. Split personality? Bring it on.

 

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.

 

 

 

September 19th 2006, Breathing Lessons

September 12, good times

I have developed a list now and every night I send an email message out into the universe to all the people who care about Terry. Hopefully, everyone is not sick of the updates. This feels like going to the movies and waiting for the happy ending, sometimes it takes a while. It feels like we’re in the part of the scary movie where everyone in the audience is either holding their breath or screaming at the dumb high school couple to stay in the car. I’m waiting to see what happens next too.

Today was a great day, after some discussion this morning the doctors decided to risk taking out the tube down Terry’s throat that was supporting his breathing. He was breathing on his own—they think—but his lungs were such a mess they wanted to give him all the help they could with extra oxygen, hence the tube down the throat.

The tube was obviously distressing him so it was better to risk pulling it out at this point. I came back in to the ICU after taking a break while they removed the tube to find a guy I finally recognized–and one who was much, much happier. He is still not all the way out of the woods but today he had his eyes open for long periods of time and he even managed to croak out hello when asked. I think he is all together in there and I am so happy about it.

Every time we went somewhere with a hill, Terry parked my bike for me because I don't do heavy and backwards real well. This shot is at St Helen's with a whole pack of friends.

The analogy would be that he is stuck in a tent taking a nap and he can’t find the zipper to get back out. We know he’s in there—and we can’t show him the zipper, he has to find it to get out and reconnect with us. He’s making great strides and we are all really happy about it. We still have a very long way to go but seeing him actually take a real nap and snore because he was finally comfortable just about made me cry.

He’s still very restless, you can tell his back is killing him and that he hurts all over in spite of the epidural. He is the color of an eggplant from the back of his knees to his neck and I cannot imagine how that must feel.  He kept trying to grab the line that was in his nose and yank on it so I spent an energetic day keeping that from happening. He managed to scratch his nose, his ear and his itchy beard in spite of the fact that he has on a collar. His neck has some little fractures on the flanges on the side–doctors say no big deal he doesn’t need the flanges that much but the collar helps them heal. I’m saying a prayer that tomorrow is even better. We are starting to think about being able to come home sometime next week.

I love this shot of vibrant healthy Terry. This was the day he started construction on my fabulous studio building.

Terry will most likely be transported to the rehab center at Providence St Peter Hospital, but I still don’t know enough yet to come up with any solid answers about the future. I’m taking it one day, one hour, one minute at a time.

TBI: Billings ICU Saturday Night

 It’s ten o’clock Saturday night, and I just got back from the ICU. At seven, they toss everyone out for shift change and then let us all back in at eight-thirty–no visiting hours are set for family members; a blessing for certain. I finally met Terry’s night shift nurse, Dave, who is a great guy. I am so impressed with the ICU staff at this hospital. They must have cut these guys from some very special cloth. I have no idea how these nurses find the grace and the guts to be with one critical care patient after another, especially when  many of their patients come to die in the intensive care unit.

Sunset on the farm, we caught this sunset leaving Terry's sister's house in Custer City, OK

Terry’s sister Sharon flew in from Custer City, Oklahoma to see for herself how Terry is doing. I have convinced the rest of the family to stay put, although some of them were saddled up and ready to ride. I don’t have the energy to pat heads, comfort people, answer questions or participate in emotional hand wringing right now. I am as focused as a tightrope walker over a shark pool, and having family shaking my rope would make me very cranky. Sharon is the family rock and I got to know her better when we visited the Oklahoma branch of the family last summer.

Terry and Sharon's husband Dale, chewing the fat near Aunt Harriet's old place in Oklahoma

I don’t want to ever, ever live there, it’s hot and flat, but it was such fun to visit and I am grateful to Sharon for being here and reporting back to everyone else in the clan.

Terry is inching forward in tiny increments. He is still not out of the woods and he is not fully conscious. He has been upgraded from critical to serious but stable condition. I have learned in cases of severe blunt trauma to the head it can take a long time for people to come to full consciousness and sometimes they don’t make it all the way back. I had to process that information today and it was pretty hard.

 I guess I had on rose colored glasses and I didn’t understand the big picture. I asked repeatedly to speak to the neurosurgeon. I think having an insignificant wife demand to speak to the diva irritated him because he was hostile and rude when he finally made thirty seconds in his day for me.

Windmills are all over the midwest and the far west. I shot this one in Oklahoma, somehow its perfect because TBI is like having windmills in your head

He didn’t pull any punches and he dumped his opinion on me like an ice water bath. I managed to give myself the satisfaction of not crying until he was gone. It was the first time I have cried since the accident. It was the first time I really understood that Terry might not ever recover. He may not ever even be fully conscious again. I am still coming to grips with the fact that our lives have changed forever and I won’t know for a long time what the future holds. I am determined to take it one day and one blessing at a time.

Today I saw Terry move his feet on command. Dr. Spike (the one I really like) said, “Move your foot”. He tapped the foot and Terry wiggled his toes. Then he said, “Can you move the other foot?”  And Terry did. He asked him to move his hands, and he was able to open and close one of them but the other one is pretty well broken and not very moveable. Terry opened his eyes on command too, I could see it was exhausting for him, but he did it.

Going out to get coffee,  I always see the waiting room  outside the ICU full of a rotating cast of twenty and thirty sobbing members of a patient’s family, and I wonder how anyone can even focus on what needs to get done in the maelstrom of emotion they are generating. They seem to feed off each other’s fear and anxiety. Then that family is gone and another takes it place. I guess I’m selfish, it seems to me if they all fly out here to say good-bye then good-bye is what they’ll get and I am not going to that place.

This afternoon when Sharon was with me, Terry opened his eyes and turned his head to track my voice,  he looked at me for just a moment before he closed his eyes again. He does grab my hand and hold it; he knows I’m there when he swims into consciousness. The poor guy is caught in a slow motion marathon.

Terry had a head CT scan today and it came back normal, thank you God, no more bleeding in his skull.  His fever is down to almost normal and the crud in his right lung is moving out. He coughs and it is silent because there is a tube in this throat. The tube gets filled with the phlegm and awful stuff from his lung, he struggles and gasps for air, and I have to sprint to find a nurse to come in and go through the process of forcing a plunger into the tube and pulling it about two feet back which suctions the nasty stuff out so he can breathe until the next coughing fit. 

 This is the second day of pneumonia and this process is agony to watch.  I have spent the day watching him like a hawk and knowing where all the nurses are so I can find one fast. Hopefully, the stuff he aspirated after surgery will be gone enough for them to take out that breathing tube tomorrow because I can tell he really hates it and it panics him. The big concern is can he support his own airway at this point? Doctor Spike thought today that he could but we’ll know more in the morning. (His name is Dr Peringer but his nickname is Spike–he is a wonderful doc and I am grateful we have him).

I cannot begin to tell express what it feels like knowing there are people all over this country in prayer circles, churches, and just everywhere praying for Terry. The blessings from those prayers feel like a big rock someone tossed in the water a long way away.

Water Heart

I can feel the ripples spreading out around us and holding Terry up. Tonight I went over to the hotel and brought my Ipod and speakers back to the ICU again. I’m going to play some of his favorite music for him and drown out the sounds of the ICU. He was awake for almost 40 seconds this evening, a new record and I am hoping for better tomorrow.