Tag Archives: TBI

The Red Lunchbox

cALI TERRY SUNSET1

November 8, 2006 was the day our lives would start to change again. I drove back to the Centre for Neuroskills from the Sheraton hotel in Bakersfield, about a 20 minute drive, and I remember feeling the craziest sense of panic. I wanted to see Terry but I wanted to run away too. My hands were shaking and I felt like throwing up when I got to the apartment complex.

The apartments are gated  to keep the residents safe, you have to push a buzzer and tell them who you are to be allowed on the grounds. A disembodied female voice identified me and a loud buzz send the gate whirring and clanking open. I pulled slowly in and parked my rental car in the carport. In a normal apartment building it would have been full of cars. Here it was empty except for me and two stacks of chairs, the kind you see in cafeterias. I wondered idly why two stacks of blue chairs were sitting in a carport?  I turned off the key and just sat for a minute; breathing and getting myself to the point where I could smile and talk and make sense.

I rang the doorbell of Terry’s apartment and the door opened on a noisy non-verbal patient and helpers bustling around the living room and kitchen.”Come in, come in! We’re getting ready to go and Terry is waiting for you.” I was pulled easily into the morning bustle of getting ready to go to the center for a day’s work. Terry was dressed and standing in the kitchen, shoulders hunched and looking bewildered, the first day in a long road back had just begun.

This is the piece I wrote after that morning.IMG_0406

Red Lunchbox/TBI 2

They gave you a red lunchbox,
your name printed on it
in bold magic marker.
You knew it was a lunchbox
but not what it was for.
“Let’s make a sandwich”,
I said in my fake-cheery voice,
because I would not cry and I would not
share my sadness with you
like a drive in movie
where emotions are ten feet tall.
The butter knives were locked up
and I had to request one
like it was King Arthur’s mayonnaise sword.
47 minutes of careful direction:
walk to the refrigerator
choose bread
take out two slices
lay them on the counter
choose mayonnaise
can you open the jar?
Choose lunchmeat
it’s in that package.
You constructed your sandwich slowly
you were building the Taj Mahal of sandwiches
for your red lunchbox.
I left you there getting help with your coat,
your first day of therapy still ahead
I sat in the rental car and cried
for both of us and wondered who would help you with your sandwich tomorrow.

TBI: We Arrive at the Centre for Neuroskills

Does Anyone Really Know What Time it is?

Does Anyone Really Know What Time it is?

 Bakersfield, November 7, 2006

Terry didn’t sleep well and got up early, 4:30 a.m., he thinks he’s going fishing again. I’ve learned to just say, “Your friends will pick you up later, right now we have to fill-in-the-blank”, and we move on.  He’s Captain Froot Loop today and not connecting to reality well. I’m glad we are on the way to the Centre, finally, some help.

We got to the Centre for Neuro Skills around ten in the morning. Map Quest got me right to the place and I drove right past it–twice. Its an unprepossessing building in an unprepossessing area, the centre has a strip malls and a big shopping center as its nearest neighbors. After we parked and went inside the ‘vibe’ changed radically. As we got there a boatload, okay a van load, of clients were delivered from their apartments to the Centre to get their therapy day started. I was  struck by the positive energy radiating from all the staff. Everyone who comes in gets a cheery greeting by name from the receptionist, the therapists and the workers. I feel so grateful for Terry’s physical health. The people who got off that bus were tragic in so many ways, many in walkers or wheelchairs or with other really obvious disabilities and I cannot see them making it all the way back.

We got a tour of the facility and within an hour Terry had been pulled away for his first therapy appointment. He was already on the charts/schedules before we got there. Apparently the first week or so he will be intensely scrutinized and viewed and examined and conclusions will be made as to what his needs are. They will be presenting a monster-sized report to the insurance company with their findings so time is of the essence.

After an hour or so in the waiting room watching other families and clients and wondering what we were all thinking, I was escorted back to meet Terry’s therapist. He showed me something called key chaining that Terry was doing.  It was hilarious and appalling all at once. I was sitting next to Terry in the office when J.M. asked Terry to repeat after him, “The sky is blue, the ground is brown, I am wearing a hat, this is my wife.” Then he asked Terry who was next to him and Terry answered promptly, “My hat.” So, I am in good company with Oliver Sacks and his book, The Man Who Mistook His Wife For A Hat.

Walking down endless circular corridors, I noticed that there are polka dot stickers on all the walls. I asked about them. It’s a test, and patients/clients have to work through finding their way using the dots. How long until Terry can even see a dot on the wall?

After we finished at the center today we went to the apartments dragging Terry’s giant suitcase with all his clothes and family photos and the things that make up a life. The apartments are in a really nice area of Bakersfield, gated and about ten miles away from the offices. The Centre believes that to reintegrate to the real world clients/patients need to learn to closely mimic the way the world works. This means buying their own food each week, learning to cook their meals, going on outings, doing their own laundry and as much as possible living like a normal person–all completely supervised and set in levels. Once a skill set is mastered they go to the next one until they are able to leave to live in the ‘real’ world or can go no further. The permanent residents who will never completely recover have a nice set of apartments of their own and caregivers based on their needs. I so hope that Terry can make it back to a better reality with us. It makes me lose my breath to think of him living here forever in the care of others.are you lost

The apartments are spacious, mid 70s in design, well kept and landscaped and nice. Terry is in a ground floor unit where he has his own bedroom and two roommates who share the general living quarters. I did his grocery shopping for him to get him started and put his food away on his own shelf in the refrigerator. They give the clients a set allowance for money and for outings each week. Anything like clothing and haircuts are out of the funds I left for him. He has help 24 hours a day  to relearn the skills he’s missing and they all seemed very cheerful and smart.

I learned a lot that I want to share but I’m just too  tired to put all the philosophy and such like out there and gnaw on it. I think Terry will get much better, I’m comfortable and pleased with the place he is in and so grateful we found them. I think he has far more damage than we first thought and that he won’t ever make it all the way back–but he’ll get really a lot better with time. So, I’m ending this day on a hopeful note. Tomorrow I go back to see him for the morning and in the afternoon  I say good bye and head to L.A. He kissed me good night tonight and settled in to his bed and seemed to be doing well. We’ll just have to wait and see at this point.

Good night Moon. Please make sure he can’t find a screwdriver and escape….

Hope is the thing with feathers.

Hope is the thing with feathers.

The Only Way Out is Through the Door: Strange Days in the Land of TBI

Calico Door

Calico Door

location: Bakersfield Hilton
mood:     cranky   date: November 26, 2006

We made it to Bakersfield with everyone intact. Terry didn’t escape and I didn’t kill him.

We drove through the night and the guys, bless their firefighter hearts, pulled the monster motor home into a gas station in Bakersfield and filled it up. About $150.00 of gas cash from my pocket later, they dropped us at the car rental place at the Bakersfield airport and turned for home. I love them for being so generous, you can’t pay back that kind of caring. I got the car rented, loaded Terry and our luggage into it and headed for the hotel. I have schools in Bakersfield so I at least know my way around. Its nice to see the sunshine again and I’d like to think it makes Terry happy too.

Terry and friends outside the motorhome

Terry and friends outside the motorhome

We had lunch at a Mexican restaurant which was not memorable except that Terry dribbled salsa down his front and in spite of my sotto voce command of, “Don’t do that!” He ate the hot salsa with a spoon like soup. Note to self: find the tums and tell him they are dessert.

Terry, the sad prisoner

Terry, the sad prisoner

I am so glad there is only one more day before Terry goes to the center tomorrow. I would like to stick him in a wicker basket  on their porch with a note on his chest and drive off into the sunset, but instead I’ll be there, the dutiful wonderful wife at his side supporting him. And yes, I still am that but I’m tired, frustrated, sick of him and want this whole nightmare to be over. I feel so sad for him sometimes, he really is pitiful now in a lot of ways. This strong man is wandering around the hotel room hunched over without a shirt on, he looks like a little old 80 year with a saggy body because he’s lost so much weight.

In our room he is very agitated because he is sure we need to burn our clothes as part of the hotel fire protection. Thank God there are no matches. He pulls a case off a pillow because he needs a fusible link and we are off to the races. He demands the keys and tells me he is going to sleep in the car because I am such a bitch. Just what I need, my naked husband with the hotel coverlet wrapped around him running through the lobby. Perfect.

At this point, I finally call Shayne on his cell phone and make him talk to his father. Shayne can usually get him in off the ledge because Shayne is never with him for more than an hour and they are still at the “I love you, Dad, you are my hero phase.” Gag. I’m at the shut the fuck up and sit down phase. Poor Terry. Most of the time I cope just fine and things are as okay as they can be in this insane anteroom to hell.

He goes to bed starting at about 6:00 and comes out every five minutes to see if the t.v. is turned up too high or I’m still up or whatever. Of course I’m up. I’m still working until after midnight most nights at home. Terry throws his clothes on the floor and changes four or five times a day. I’m doing excess laundry, dishes, whatever it takes to keep the world running. No one is helping anymore. After the drama the grind sets in and friends fade. When I get my nerve up I call and ask for an hour here and there to go shopping for groceries.  We  had a ‘housekeeper’ for two days. What a mistake that was! She was supposed to watch Terry but was totally unable to relate to him in any way and mostly she smoked outside and sulked inside.  I called the agency and said to not send her back. It’s easier to do it myself.

I’m so glad we finally have at least a ray of hope. A window of chance to get him some help that I cannot provide. What are the parameters? If I baby him and put up with him will he just stall and stay in this terrible place? If I push him, when is it too much for both of us? I just don’t know, and I don’t think anyone does who is an unexpected caregiver.

After Terry talks to Shayne, Tor calls. He’s 14 and this is scary. He doesn’t know where Shayne and Heather are and it is getting dark.  He’s there and I’m here, helpless and mad.  Poor kid, one more lousy Terry thing for him to cope with. They were supposed to be at the house hours ago to stay there for the week I would be gone, so far no sign of them. I finally run them down and they say they are doing laundry.

Another hour passes, another call from Tor, home alone in the dark in in Olympia.

I finally get a call on my cell phone while sitting on the floor in front of the hotel room door to keep Terry from escaping naked to run through the corridors. “We can’t come, Heather has allergies to your cat.” I don’t even get mad, I just hang up. I will have time to be angry and never forgive them later. I  simply called my friend Faye, my go-to girl. She is in her pajamas but she jumps right in her car and comes over to spend the night, now that’s a friend. My son Corey who works two hours away from Olympia,  has promised to stay at my house with two dogs, two cats and one kid for the rest of the week. His poor wife and kids will be sacrificing him to the gods of TBI for the duration.

Calico Cowboys and Indians, California tourist town fun

Calico Cowboys and Indians, California tourist town fun

I am in my own one ring circus with Terry again. It’s 6:01 on Sunday morning. Terry decided he had to get up at 5:05–started to get up at 4:14. I want to kill him. He slept like a log from about 8:00 on due to the Trazodone I stuffed into him. It makes him giggle weirdly and he’s off balance but he sleeps. I’m glad Robin posts the ‘tidier’ emails about Terry because if only my posts were read this whole thing would look demented instead of just the demented moments that I seem to need to catch.

Its the day after after our amusement park ride that lasted 24 hours in the RV. I hate sitting sideways and I hate not being able to see out. It was like being in a big, rattling, banging, noisy, box with steamed up windows. Terry was miserable and sure we were kidnapping him and taking him somewhere evil. Keep in mind, the motorhome was generously loaned to us and that the drivers were two fire fighters who are his old friends. He just knew the cops were looking for us. He wouldn’t lay down in the bedroom because it was an unsecured area. So we had to bounce along most of the night in the living room sitting up. It was like being in a silverware drawer full of silverware in a non stop earthquake. Bang bang rattle rattle thump thump and Terry sulking.

We stopped in Oregon for dinner near Roseberg and he was surprised to see his parents in the parking lot. He had only had it explained every day for weeks. He was obviously having a very foggy day….but I’m glad his mom got to see him.

Going for a ride, stuck in traffic on a sunny day makes me happy.

Going for a ride, stuck in traffic on a sunny day makes me happy.

He seems a little more sane today now that he is awake and dressed. We are going to try to drive up to Calico, a touristy ghost town that he loves. I cannot sit in a hotel room with him for 24 hours or one of us will not survive. He loves adventures so I hope this will be fun and wear him out before bed time. Tomorrow is the big day he checks into the Centre for Neuroskills for God knows how long.

I will be driving on into LA and stay from Wednesday to Friday  to meet with the boss who hired me months ago and has put up with my crazy non-working schedule and paid me anyway. I am looking forward to getting at least part of my life back. I am dreading saying good-bye to Terry, it will be a relief and a rending. I  think I will cope by going out to dinner and getting  fairly drunk one night. It’s a start.

TBI and Philosophy, Keyhole Moving

 

Before Bakersfield, Terry looking sad and lost with wonderful John Neff. John went to bat for Terry and believed he could make it all the way and saved his job for him. John died last year and we all miss him terribly. I’m glad Terry got to prove John’s faith in him was justified. John Neff, my angel number one.

11/20/2006 We must have done something right. Terry has been accepted at the Centre for Neuroskills in Bakersfield. We leave right after Thanksgiving in a borrowed motorhome with two wonderful firefighter friends at the helm. I will pay for the gas but that’s the easy part. I finally have hope.

It’s time for a little philosophy.  I know everyone is saddened by the changes in Terry. He’s not the same proud independent guy we remember and its hard. It takes me down at strange times– grocery stores, pieces of music on the radio, driving down the road–I try not to cry and to just put one foot in front of the other but more than that, I always come back.

I think I am an odd breed of cat and it helps me cope. From the time I was a little kid I can remember getting up every morning and thinking something wonderful would happen that day. I used to call it my butterfly feeling and it actually physically tickled in my chest like feathers or bubbles. I never lost it. Every day is new and special and wonderful things happen.

It may be just seeing something with new eyes, finding a penny on the ground, making someone smile or better–laugh out loud. I have my tattoo that says Hope is a Thing with Feathers (Emily Dickinson) and my featherbracelet to remind me too. Yes, I get down but I don’t stay down and you shouldn’t either. I appreciate all of you holding us up with your wings–I can feel the breeze from all my angels out there every single day.

To help you understand Traumatic Brain Injury and why I have to fight so hard to make sure Terry can stay at the Centre until he has made all the progress he can, I give you the following:

In America we expect to take a pill, get an operation, or apply a cast, bandage or something orthopedic and impersonal to fix people. We look for the magic bullet and the magic gun and we have a hard time understanding that with brain injury the magic is in the hearts, hands and heads of the people who understand how to help. The magic is the depth of education and study they go through to even begin to be able to help.

The brain is the last frontier, internal space rather than external, and I am so glad the Centre for Neuro Skills is full of intrepid “explorers  and rocket scientists”, so to speak, who will help Terry back from his long dark journey. If it can be done I think they can do it.

With brain injury the only thing that can help is humans. Humans have to be the medical devices and their brains and hearts are tools of equal importance.

Terry and Jerry Warnock, a firefighter EMT and the man who called me to break the news of Terry’s accident. The two of them and their motorcycles went way back. This was at the fire department a day or two before we left.

To help someone with TBI is like moving all the furniture in a house that’s been in an earthquake through a keyhole. When the helpers arrive, the lights are out most of the time in the house and even seeing into the windows is problematic. When the lights are on everyone moves fast and does as much as they can. Moving furniture this way is hard, and the owner of the house is exhausted by all the racket coming in the keyhole and he retires to sleep and get away from it frequently. The helpers know this, and they take the dark time to plan strategy for the minutes they have light because moving furniture in the dark through a keyhole is really hard.

As time goes by they help the owner of the house find the lamps one by one and get them turned on; whether it takes rewiring the fixture, putting in a new bulb or just turning the switch. That’s the assessment part.  After the lights stay on most of the time they can peek in the keyhole and see the house is a mess. They have to go about figuring out how to pick up couches and chairs from where they were knocked over and it’s hard. Sometimes it can’t be done and they just have to go around the overturned furniture.

With luck and perseverance, the owner of the house can learn how to turn the key from the inside and open the door. When the door is opened, sometimes the helpers can help the owner go into other rooms and find furniture that will fit. It’s not the same but the couch works with the wallpaper so they go for it and it works out, a new couch is much better than no couch. At this point friends can come and sit on the couch and talk and find out how to go forward together.

With God’s help, time, and the help of a lot of human furniture movers who are seriously trained specialists in Keyhole Moving, Terry will have a house/brain that is a home again and you will all be there with us when he does come back to Olympia.

Nola and Terry. Nola is angel number two for me. She handled paperwork, ran interference, answered questions and was there every step of the way for fire department insurance issues and questions.

Keep those wings beating my angels–we love you all.

This was written just as we left for Bakersfield to begin the next Chapter of Terry’s story.

The Bureaucratic Bridge

The Bureaucratic Bridge-or how we got Terry from here to There. October 2006.

This is the guy I married, Christmas time delivering toys with Santa on an antique fire truck.

Where was I? I think I left off with our turn in the psych ward at St Peter’s Hospital.  Somewhere around there I hit the point of desperation, and blessedly due to a chain of prayers and circumstances we found Dr Joe Moisan, my personal angel.

Terry’s sister Penny had Dr Joe as a visiting faculty lecturer in a college psych class. She gave me his phone number and begged me to call him, she thought he could help us. He agreed to see Sherry and me the same morning I called. We drove the hour to Grapeview out on the Hood Canal to his home on the water.  We were there so long his wife had to make us tuna sandwiches for lunch.

Dr Joe cut through more malarkey in one more morning than I cut through in two months. Amazing. Joe called and had an appointment with Social Security set up, even though Terry didn’t qualify because fire fighters here are self-insured, just one more hoop to jump through.

He  made a phone call to Bakersfield, California to the Centre for Neuroskills because he thought the facility might be the perfect place to help Terry. That turned out to be a life changing call. We got an appointment set up in the Seattle area with a neuropsychologist to assess Terry’s level of cognizance and exactly where his injury was causing problems.

I dreaded the drive to Seattle with a crazy guy who might jump out of the car any minute, but I would have walked and carried him to get the help we needed. I wrote out a check for the down payment on Dr Joe’s service and thanked God for good insurance and a great ombudsman.

He guided me through the next few weeks and made the drive to meet Terry one evening. Doctor Joe gave me excellent advice on techniques to deflect some of the head-on battles I was running into with Terry. The care and information we give caregivers is abysmal, no wonder they burn out and fall apart, me included. Just knowing about how to handle things with deflection or distraction was wonderful and made life so much better.

This is what I had at home. A truculent, cranky, crabby man I didn’t know any more. This doesn’t even look like Terry.

In the middle of hoping we could get Terry into a facility dedicated only to brain trauma rehab, I still had hoops to jump through every day with mountains of disability paperwork to fill out. Duplicate statements had to be gathered from a raft of doctors, policemen, caregivers and our medical insurance providers. I quickly filled an entire drawer in my filing cabinet with paperwork .I still have it. It amazed me how many times I had to send the same stuff to the same bureaucrats.

I have to say our medical insurance people were wonderful; we have two companies because Terry is a retired fire fighter. Both providers gave us an ombudsman which helped a lot and it’s something I recommend anyone dealing with a huge medical issue. Insist on your own person who is a point of contact.

The Social Security disability interview was hilarious. The lovely young lady doing the interviewing insisted Dr Joe and I sit in the back row while she spoke to Terry and asked him simple questions. He got his name right, but not his birth date. Then she started on the hard stuff, like his mother’s name and where she was born. We were off to the races and I had to fight to keep my mouth shut. Doctor Joe laid a restraining hand on my arm and signaled to let them flounder away. Terry was great; he made it up as he went along. I learned along my way through the brain trauma swamp this is called confabulation. The brain takes snippets of information that may be correct and just pastes up anything it can find to make whole cloth. It was fun to watch as she just got more and more lost before she finally put her pencil down and sputtered to a bewildered stop.

We got a form letter from Social Security two weeks later saying he didn’t qualify for Social Security Disability because he was a self-insured fire fighter, which I promptly sent along to the disability people, checking off the just one more exercise-in-stupidity-box.

Sherry and I took Terry to Seattle  on a damp fall day to see the neuro doc, carefully making sure Terry couldn’t get the door to the car open from inside. Thank you for childproof locks, Dodge Company. It took hours and he flubbed almost everything. The doctor was able to pinpoint where the injury was and what was going on which was more light shed than we had had to that point.

Before we knew it, the Centre for Neuroskills had sent a caseworker all the way from Bakersfield to visit us at home. The poor guy arrived on a soaking wet pouring-down-rain day from sunny California. He looked like a drowned cat but he knew his stuff and he told Dr Joe and me he thought Terry would be a good candidate for CNS. Except. Except that Terry’s birthday made him a week too old for the Centre.  Thankfully, they bent the rules and accepted him as an inpatient for as long as it would take, they thought about a year. For the first time I could see a light at the end of the tunnel that wasn’t the headlight of an oncoming train. There was help on the way and I felt like crying but didn’t have time.

I have to say, TBI care is seriously expensive help. If I had been the one who killed a deer with my head I would be stashed somewhere local, degrading into an inconvenient brick around the family’s neck. Once again, being a fire fighter is a wonderful thing. In return for running into burning buildings and pulling people in pieces out of cars after accidents, the fire department takes care of their own, and does it well. I’ll say it again, I am eternally grateful.

Terrible T.-the Unlaundered Version

Oct. 21st, 2006 |

The email update list who wants to know how Terry is doing gets the sanitized version; my journal gets the director’s cut–the down and dirty ugly parts of brain injury. Frontal lobe injuries ruin the ability to control impulse, organize, make any kind of judgment or decision and they release all the anger usually kept under control.

T. cannot behave appropriately–as in identify the toilet, not eat a whole sausage patty in one bite–or not reach into a pot of boiling water to get at the rice in the pot. He has to be watched every second and he hates it on some level. I’m exhausted and scared and just stunned by the consequences of his decision to ride his bike at night.

No one could have predicted it, but I seem to be the one paying the piper and I am starting to wear out and be really angry at the world of insurance and the medical community. I’m also angry with T. and frustrated because he cannot understand any of this so I stuff it down and don’t take it out on him.

They scrape someone off the street, save their lives and dump them back into the world whether they are ready or not. With traumatic brain injury, TBI, as the cognoscenti call it, they are seldom ready. The TBI world is populated by an infinite variety of symptoms, causes and effects. Each person is different in their reaction to treatment, medication, and general recovery rate and degree of recovery. No one has any answers and they gently skirt the truth–which is:
a)we don’t have a freaking clue
b)frontal lobe injuries are the worst with the longest and lowest recovery

There is nothing in place to support the people stuck with trying to cope with what amounts to a giant brain injured two year old. Everyone has an opinion but I don’t see anyone here at 2:00 a.m. when I’m trying to talk him in off a ledge and getting nowhere. Fortunately, we have no ledges in reality; but last night he did go outside in the rain barefoot and mostly naked. The yard is fenced and we put locks on the gates or the cops would be here by now.

Although I am the only caregiver–another word I have come to hate–I still have to work to keep a roof over our heads and be able to pay the bills. How can I do this when I watch him all day and all night? Even if I had day help, he doesn’t rest at night so when am I supposed to rest? I am just beat today,napping on tenterhooks and able to flame to full consciousness in a split second when he sits up and gets ready to move. I try to just follow him and not intercede unless he’s doing something dangerous that could result in harm.

I really don’t think he will ever return to work. I am hoping that his care will be paid for and that he can stay home. When he does well he does really well, just not for very long. What is happening now is what I was scared of all along. He does not remember any one from the last two months– nor does he even know what town he is in most of the time. His health is improving and we are going to the doctor next week to ask about his meds and show the doctor I do need help. I will ask the doctor how on earth we can change any of this behavior.

The therapists finally all showed up Friday after I had a fit because they hadn’t even called. They seem to have some ideas and are going to work with him. This will be good I think. I keep expecting the magic bullet. The thing that makes it click. I want to see him realize with horror that he crashed his bike. Not just take it in and keep going, like I told him we were having pizza for dinner. That will probably never happen.

I got hold of the disability board yesterday and asked them what they needed to give me what I need. I have to present all this stuff as medically necessary and come up with costs etc,. to present to them–and watch Terry at the same time. SSN has to to get filed for, but that’s an exercise in stupidity as he doesn’t have social security because he was a fire fighter and didn’t pay into it. I really cannot afford to hire a caregiver right now–especially one that I have to come in and intercede for every ten minutes. Heather is willing but she cannot handle him in any way. he doesn’t listen or respond to her so I cannot use her help. I may wind up having to hire a big strong guy to hang out with him and figure out how to share nights.

I want to explore adult homes for him, might be the best option at present. I need to document the true weirdnesses but right this minute I think I’m too tired…..

 

TBI Six Years Later, Sharing the Story

On September 12th, we will mark the sixth anniversary of my husband Terry’s life changing accident and our fall down the rabbit hole that is traumatic brain injury. Somewhere in the past year, I got so busy just living life I didn’t finish transposing all of my journals about our journey through that time. Its time, I need to close that circle.

http://coreysnow.wordpress.com/2012/09/03/like-tears-in-rain/    Now my oldest son Corey is dealing with TBI, the result of his wife having had a stroke a few years back. It has finally been diagnosed after years of frustration, but it came with its own overwhelming set of problems. It reminded me  again of how hard and harrowing that journey back is for caregivers. I need to pick up my “pen” and write what I know, what I learned. If I can light a candle for one single person to see their way a little further down that dark tunnel, its worth it.

Here is the next chronological entry from my journal six years ago. The earlier posts will be found listed in the Category tab to the right under down the Rabbit Hole, or above under Living with TBI.

More Horrible life of the TBI

Oct. 22nd, 2006 | 12:09 am

This is a long, long rant. Feel free not to read it–but I have been in my house for seven days now with one short visit out to the grocery store and another one out to pay bills while someone else kept an eye on Terry and I need to talk!

I am devastated by what the future looks like for brain injured people and their families. There is no help for them in Washington to speak of. We have been home a week tomorrow and it has been a hard week–I am going to continue sending these updates out occasionally because no one on the planet–at least the part of the planet called Washington, has a clue as to how to help anyone with a brain injury and the more people know the more we can begin to demand a change to the situation.

The insurance companies don’t appear too useful once the acute care phase is over. Doctors are the same way. In no way is Terry ready to be at home except perhaps physically. If he had only had physical injuries it would have been fine but with the mental injuries he needs 24 hour care. Not necessarily an RN with pills and needles–but guess what? For the most part insurance only covers “intermittent” in home care delivered by an RN not the necessary 24/7 minding.

I am so angry I can hardly speak most of the time. The hurdles I have jumped this week and the hoops still ahead make me want to just sit down and cry. I have been unable to return to work and unable to do anything but make sure Terry doesn’t hurt himself. He has a severe disconnect between reality and Terry. Yesterday he found his earplugs and sat down to put them on–his feet. That was funny…. today he got dressed by putting his tee shirt on his legs and yesterday he decided to shave with his electric razor. We caught him just before he dipped it in the water. He almost knows what he used to know and as a consequence is seriously dangerous in his application of what he thinks he is doing to what he is really facing.

So why do I need this constant care for him which I am not getting? Terry does not respond particularly well to me, his son Shayne or Shayne’s wife, Heather. We are not peers and he sees no reason to follow our wishes, orders or demands. I can ask but he doesn’t necessarily comply–even if I’m trying to get him to see he is about to urinate all over his chair.

He has no sense of time, no sense of direction and cannot find doorways well. He doesn’t know what things are or what they are for quite often. I am sitting here on the couch and just heard the bed rustle and creak–automatic stomach ache—is he getting up? Will he be able to find the bathroom this time? What will he do? In the middle of the night more often than not he is unable to recognize the bathroom and has urinated on the toilet, under the sink, on the rug outside the closet and in the yard when he cannot be stopped from going outside in the dark and rain completely naked. Luckily our yard is fenced but Thursday he claimed he was putting his shoes on and insisted on going out the front gate barefooted and walking on sharp gravel to the neighbor’s recycle bin on the street which he proceeded to open and peer in—looking for his shoes. I finally convinced him to come back into the house and succeeded in helping him with his shoes.

In the night when he gets up he is like a man possessed and Terry is not in there, he is a sundowner. Its someone else who is sarcastic and angry, refuses to speak to me and more than once has offered to move me if I  don’t move. This happened last night when he got up and decided to go outside at 1:30 a.m. I had to follow him out of bed when he said it was time to get up. I told him it was the middle of the night but he did not believe me and said I was a trouble maker. He grabbed a blanket and succeeded in pulling it over his head–instead of wrapping it around himself. He had no shirt or shoes at this time but at least had on pajama bottoms. He headed for the door and I stood in front of it and told him he was not going out. He told me to move or he’d move me–I said no and blocked the door with my body. He told me again to move and tried to grab me and move me. I wasn’t budging and he gave up and turned around and went out the back door before I could catch him. He wandered down the sidewalk and back into the house where he sat on the couch and tried to sleep. I asked him if he knew where he was and he said it didn’t matter because I would just lie about it anyway. It was 1981 and he was at Ft Lewis according to him. It is the strangest feeling in the world, so surreal to be facing things like this in the middle of the night. I always check to make sure the knives are put away and my cell phone is in sight in case I need it. So far no real tragedy has occurred except to my nerves. These incidents shake me badly and I am losing ground with my feeling that I can control the situation.

Today he was sleepy and sweet and very nice and almost like Terry, but he still isn’t Terry and never will be the same. With luck he will become someone who can come back into the world and be a new and different version of himself, but that takes time and rehab and healing. No one knows how much time it might take, no one can even guess. It’s very odd to be talking to him and just watch the lights go out in those blue eyes. You can see him lose his focus and then he either falls asleep right there or starts talking garbled nonsense that sounds fairly normal–today he was playing baseball all day according to what he told Don Bowman. You cannot distract him or tell him what is really going on. He is unable to take it in– but then he’ll come out of nowhere with a bit of something that stuck in his synapses. We went for a slow walk today because the sun was out and it was so beautiful. I asked if he wanted to go to the garage and see his motorcycle. He said, “No, it’s just a busted up Fatboy.” This is the first time he has realized he has a Harley. He still cannot comprehend the accident and all the retellings in the world have not really sunk in at all. He literally does not understand why he hurts so much and what happened. He retains new information about 5 minutes to 1 hour depending on some set of circumstances I don’t understand.

I’m desperate to find help. I have to go to work because Terry cannot and all I can do is watch him all day long. I get nothing accomplished and my shower is still not done. I have to find ten minute increments when a friend is there to keep an eye on Terry. I have been without a shower for two weeks now and I’m getting fairly tired of cat baths in the sink. I’m on the last wall and hoping I can steal enough bits when Terry is asleep to finish it so I can grout it.

The problem with finding the help we need through Terry’s three insurance companies is the way the statute is written which is not for custodial care. I need someone to help keep Terry safe and to exercise his mind as much as possible. I can’t do it all. And I need more than just day help too. What am I supposed to do with a 14 year old who needs me too? According to the home health care nurse who irritated me beyond belief–an inept man who managed to screw up two or three veins in Terry’s arm–Terry is not allowed to leave the house and still qualify for this in home care. This in effect makes us all prisoners as I certainly cannot leave him home alone–even if it were allowed. I have been out of my house one time this week when a friend came over long enough for me to go get groceries and another time to pay bills. Torin was stuck and needed a ride and I couldn’t even get him because Terry cannot be trusted to ride in a car yet. (As in tired of the ride and jumping out). I had to ask a friend to rescue Torin for me. This is what insurance companies and the medical community don’t get. They are destroying a family. If I cannot work we lose everything we have and with Terry not able to work I have no choice as I have to make up our losses by myself–I don’t think I can make two peoples’ salaries all day and watch an unpredictable brain damaged wanderer all night.

He has a cast on his right hand which he constantly tries to pick and peel off. He claims hourly he doesn’t understand why he has a cast. This afternoon it was because the dog bit him, an hour before that he said he hurt it falling off his bicycle. He doesn’t connect with reality very well. He just came out of the bedroom in his underwear, he has had his medications and should be asleep–instead he is demanding the radio be turned off–nothing is on but the dryer. He is trying to turn lights out although I tell him I am still awake working. He finally gives up on the light when he burns his fingers on the bulb. Then he goes outside and down the steps–I run after him and stop him from going through the gate. He tells me he has to get the garbage out. I tell him its Saturday night and the garbage is out back. He pulls on the gate and leans into my face and says let go. I wonder if this is the time he is going to hit me? I refuse to let go of the gate and look at his eyes, half opened and completely unfocused. I tell him again to look where he is and suddenly he gives up goes back into the house and climbs into bed shivering. I follow to tuck him in and say I love you, but I wonder as I leave the room how long can this go on?

I am hoping we can find an adult home for him for a few months where the rehab staff can go to work with him and Torin and I can go see him too. The hope is as his brain heals he will be more able to understand what is going on, but for now the system has let us all down and I feel like I’m stuck in quicksand up to my eyes. I have made calls, and calls and calls and tried to figure out this labyrinth. Friday, I think I may have made some headway but that’s what I thought Wednesday and Thursday too. The LEOFF1 Disability board has to be supplied with letters from the doctor, treatment plans and costs so they can decide if saving our lives is feasible. They say they are very concerned about us but I am feeling they are far more concerned about saving their money.
Please understand I love him very much, but I want to help him get better. I want Terry back and my watching him decay is not getting it done. The therapists all finally showed up Friday and perhaps they can help. One in particular seems to grasp what is happening and I am hoping on Monday she can furnish more information so I can get it to the disability and then pray more, again, still….

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.