Tag Archives: Traumatic brain injury

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.

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.

Re-entry, The Goldfish Has Landed. Terry Comes Home From TBI Rehab

October 16th, 2005 TBI and how we survived it. I kept a journal when Terry got hurt, these are entries from that journal and those times. I hope they can help someone else struggling down the same lonely road.

We brought Terry home from the rehab center yesterday. Its only been 32 days since the Deer Incident. It is amazing how far he’s come and daunting how far he still has to go. Thank you Darrell Allston for being such a friend and helping drag all the contents of Terry’s room at the rehab center room home–how did we acquire that much crap in such a short time?

It wasn’t all things we set out to collect, but we figured we are being charged for all this stuff so we now have 3 pink water pitchers, a jumbo sized roll of saran wrap, enough ace bandages for a mummy, a whole box of rubber gloves, assorted band aids, ointments, powders, and a tiny pink dish pan. My favorite: they actually have industrially labeled hospital bath powder in hotel sized containers. So help me, it is called, “Fordustin”, I
mean is that not original? I have to dig out the shampoo and see what it’s called, “Forhairin” maybe? or maybe “Forhairinwashin” ? The Deodorant should be, “Forstinkin” or “Forpittiin” or maybe”Fornosmellin”. It all reminds of the pseudo German jokes that made the rounds 20 or 30 years ago featuring Little Red Riding Hood and a bad
accent.  If you remember those you are showing your age–or mine.

Terry sits in his chair, like a cranky spider and watches teevee. But when he wants to go to bed he wants our world to stop, doesn't matter if its only 6 p.m., part of TBI

And other friends too, Brian Kessler–we have your foam mattress –thanks, it
saved us all from sleeping on the hospital cot with a mattress which felt like
a sack of empty pop cans. Terry did complain about being bounced around in the car on the ride home so I know he hurts but we made it and he loved the renovations. He
has viewed them several times–and each time they are new. He thinks he’s in a hotel
and wonders how we can afford it.

I had ten prescriptions to fill on a Sunday, that was fun–and to keep them straight I made up a little chart so I could tell when to give him what. He’s alive and doing better so I really don’t want to kill him by giving him the wrong meds after all this.

He slept most of last night, amazing after the weeks of restless wandering around
the rehab center corridors, its 11:30 in the morning and he’s had breakfast and
he’s back asleep. I hope the pattern continues with his sleeping at night
because we have discovered Mr. Davis has one hell of an independent streak that
could get him in trouble while the rest of us sleep the sleep of the exhausted
after hours of watching over him. His short term memory is impaired and the first
thing that goes with that is impulse control and the ability to weigh things
that might be dangerous–and not do them, like going for a midnight walk naked
in the middle of winter.

The most excitement we had yesterday was Torin yelling from the kitchen for
help. He was cooking dinner and had rice boiling away in the rice cooker when
Terry showed up fresh from a rest in his chair in the living room. He got a spoon and wanted to taste. Visions of steam burns etc., ran through my head as I sprinted from the bathroom with my plaster covered paws from the shower renovation.

Terry was downright cranky and nasty to Torin who was almost in tears trying to stop him from hurting himself. Lesson 1: do not let him get hungry because impulse control
being gone he will wolf down anything in sight including hot raw rice.
Lesson 2: Try not to tell him no directly. This was borne out yesterday when he
decided he HAD to get outside. I grabbed his house shoes and sprinted after him with the ring of keys to the garage. He demanded the keys, I demanded he put his shoes on and he wasn’t having any of it–emergency averted when I reached around him and unlocked the garage. He put on his house shoes like there had been no discussion and went into the garage. The bike was there and he said it looked like it needed some work. He started folding stuff up and putting it away but got distracted and went wandering back out and into the house. His attention span is about 2 -5 minutes. This is discouraging but it is getting better by inches.

terry tests out the new shower. These pictures don't even look like Terry. Eerie, how a face can change with the mind of the person inside.

He has been far more peaceful at home although he still cannot tell me he is in Olympia–when I ask where we are I get between the kitchen and dining room–or something like. Last night he was tired and crabby and about half asleep from 5 pm on. He demanded we turn the teevee OFF and it was turned down very low. This was at 8:30 p.m.

I am tiling the shower and trying really hard to get it done but what a job–I’m sure the sound of breaking tile didn’t help much, but I told him I had to do it and that was that. It is hard to find the balance between his life and Torin and I having a quality of life that is acceptable. I am looking forward to the professionals assessing him this week so we can get some caregivers in while I have one nerve left intact. In home rehab starts tomorrow too and that should be helpful. I want to learn what they do so I can keep stimulating his brain.

We have pretty much isolated the source of 70% of his pain as his right shoulder. I don’t think it got much attention in the fray and is now surfacing as a source of agonizing muscle spasms. I’m guessing he’s torn some stuff in there and hopefully we can get his doctor to take a look at it this week.

Terry and Nellie. She has never been allowed up on the bed before. Very odd.

I am in the process of trying to figure out how all this fits together—a new wireless connection in the living room means I can work in here and listen for him in there. This is like living with Dr Jekyll and Mr. Hyde. There are two Terry’s in there–one I don’t know or recognize at all and the other I get flashes of–the old Terry.  I hope we can reintegrate him so old Terry can send new Terry to stand in the corner and stay there. It’s hard to remember that he is a giant two year old with all of a two year-olds curiosity and lack
of fear when you are having a perfectly lucid conversation with him—except that he won’t remember in five minutes in most cases.

I keep telling him things will get better but mostly I think I’m telling me. I’m sure they will too, but no one has a written a road map for this peculiar territory and it’s easy to get lost. I can tell things are different–the DOG is on the BED and he invited her up. Whoa….. Toto we are not in Kansas anymore because in Kansas the dog is not allowed on the bed so you’d better enjoy Oz before Terry finds his ruby slippers and clicks the heels together and you get booted back to the dog bed.