Reentry - and back to Reality

The message of taking care of ones self comes from a lot of directions. Family, friends and coworkers are often bearers of “Who takes care of you?” The message is appreciated though sometimes the boundaries are subject to more scrutiny than I like. These last two weeks have been nice. I’ve been off duty for the most part and the time freed up is amazing. “How hard can it be, right?” “What’s the big deal?” “You are such a great guy”, and the fateful one… “I hope my spouse would do what you’re doing”.

Annie moves pretty slowly when outside, particularly over uneven territory. It takes her time to get ready. She will always use the house bathroom at the last minute in lieu of anything public. So time gets lost in small increments. My caregiver workload is two to three hours a day in 5 to 25 minute increments. Doing most of the “errands” gets included since Annie cannot jump in the car and pick up a forgotten item at the store. We call this “step and fetch” a term that can come back to bite you if you’re not careful. In fact a friend found himself sleeping on the couch after a few too many “sprinkles” of the term.

But this also goes back to environment. I mentioned before the NIH folks said they’d like to have a “system” for the returning patient that took into account the environment. But not for the patient – for the caregivers. Keep the caregivers from facilitating the brain injury survivor into complacency. Caregivers want to do everything for the patient – bad idea. The only way for the patient to progress is to re-map the pathways to process information.

But back to re-entry. I loved having the time off from caregiving. I reveled in the freedom to move at my own pace and direction. I found I had extra time in the day for once. It made for a bumpy return when Annie came home. Suddenly my time was completely spoken for again. I was angry for several days – until we got back in our groove – and took it out on Annie. I knew I was doing it but couldn’t or didn’t want to stop. A week or so went by where I felt I simply didn’t want to be a caregiver any longer. But rather than run away, I got back into it. I recognized the commitment I made many years ago, stopped the pity party, and got back to work.

I did vow to take more time off - for both our benefit.

National Institute of Health – A layman’s field trip

I was wonderfully fortunate to be able to visit the NIH this last weekend. It was a spur of the moment trip to go up and see what they were doing with Annie. I’d read the synopsis of the work, paid some attention, but really didn’t think it would be something that helped Annie – maybe others down the line – but not directly improving ours lives. I could not have been more wrong.Those working at the NIH and the visiting team from Germany are some really smart people and they are passionate about brain physiology. I’ve always said that watching the process of Annie’s redevelopment is fascinating, I just wish it wasn’t happening to us. This last weekend I had the opportunity to learn the “why” for what I observed.

I learned a couple of neat terms (More applied science here - http://jp.physoc.org/content/543/1/317.abstract ) :

·      Inter-hemispheric Inhibition – All of you have heard the term “neglect”. This is the way of saying the brainwaves are still bouncing around the affected side or the injury but their established connections are lost or damaged and the waves don’t know where to go.

·      Neurotrophic Factors - are a family of proteins that are responsible for the growth and survival of developing neurons and the maintenance of mature neurons. It is said some of the development stops around 25 years old. I believe in my case it was around 18 as I seem to want to “live” in that freedom space.

·      Ipsilateral and Contralateral – Same side and opposite side and referring to effects we observe on left and right injuries.

·      Heterogeneous nature of stroke injury – I’ve always said “stroke” is a bucket where all brain injury descriptions are dumped. I like “brain attack” better as it seems to make more sense. I can relate that to heart attacks with their wide range of outcomes. But don’t think just because radical intervention wasn’t required that your survivor isn’t having a tough time. They may have a tougher time than some one with a total hemispherical loss. It all has to do with the way memories are stored.

But the really mind changing discussion was around how we learn and retain our memories. The neurologist explained to me that our memories are pictorial. Best described as like a hologram. It appears possible to rebuild those holograms and of course that is our role. If we as caregivers do too much for our survivors we actually are no longer helping, we are holding them back. Saying no was not the hardest part of my task list but it was up there. Making Annie do the things she didn’t or thought she couldn’t do was tough. It was so much faster for me to “just do it”. You can’t. You have to stay tough. Make those "holograms" rebuild. 

Last but not least, I had a very interesting discussion regarding craniotomy and radical intervention. Annie had a craniotomy. The surgeon literally removes a plate from the skull and the brain is allowed to swell out. It essentially keeps the inter-cranial brain swelling from depressing the spinal cord or mashing the still healthy side of the brain. Even with an outcome as good as we have had the doctors are still calling the craniotomy operation controversial. Apparently the results are not always so good. 

Homecoming

Congresswoman Gifford is going home and that is wonderful news. She should go home. Seven months in hospital care is grueling for everyone in her life from the $200 dollar a month TIRR parking tab to the requirement – very important – to “being there” for her recovery. I spent 7 months at Hermann/TIRR and Hermann Hospital at Annie’s bedside and rehabilitation. The daily visits, bringing food (breakfast tacos go a long way with the staff), greeting friends and family, and blogging on the absolutely wonderful Caring Bridge website. I “knew” if I didn’t go I would miss something or Annie wouldn’t get better. But really “getting better” meant it was time to come home. I thought nothing of the warning when her neurologist said, “Be careful what you wish for…”

We didn’t have kids. Our whirlwind work life and associated world travel kept pushing out that decision until we decided it was past the point of starting a family. I can only imagine what it is like the day a 10-pound baby comes home and life changes. I had a 110-pound baby. My friends with kids say, “Well, we had nine months to prepare”. Okay, I’ll cede the point – whatever it might be – that I too might have had time to prepare.

And I did prepare. Several useless ramps and some eventually useful handrails, covered or gated any drop-offs and generally “childproofed” the house. I made arrangements to have a live-in caregiver who would start in 30 days. And of course, I had Annie’s sisters who had been “there” through the whole process. But it still will not prepare you for the maintenance of an adult.

We have some friends who are going through the initial bumps of “end of therapy” beginning of “home responsibility”. They are in outpatient therapy that involves three days a week of going all day to a facility. And they, as a family, are experiencing the challenges of supporting an adult with a brain injury. I learned a new application of a term this last weekend at the National Institute of Health in Washington, DC (way more on this later).

The term was heterogeneous and was being applied to stroke, brain lesions and traumatic brain injury.  Simply put, all brain injuries are different in the way they affect the individual. You may find that a person with a knock to the head is completely incapacitated and someone with an injury as extensive as Annie’s is able to return to a functioning life. No logic to this – our understanding is not complete – it simply is. But that doesn’t make it impossible to determine a system for home support. Apparently some of the old thinking on “you get what you get in 6 months” was based on the survivor leaving therapy and going to their “new” environment. This might be home and family support or long term care. In either case improvement for the brain injury survivor is determined by how much support they get. And guess what? More is not necessarily better. If the family or facility takes up the daily tasks the survivor may adapt and not try to improve. This is tough love time. You want to do the things for that person that they cannot but by doing so you may be impeding their progression.

I’ll be writing up my interpretation of the lessons learned at the NIH last weekend. And possibly this will be more than anyone wants to know. But the doctors, grad students and scientists at the NIH and associated world organizations are doing some fantastic things around brain physiology. I was able to view a tiny piece of it and it has completely changed my thinking. Stand by…

From the other perspective…

What do you do as a caregiver? What level of responsibility do you have? Does the person you care for need 10% support or 100% support? Can they fend for themselves or is their thought process too scattered or disrupted to make critical decisions? Are you dealing with a new “person” or “personality”? How about taking care of you?

There have been a number of times when the news is covering someone with a handicap that is being awarded for an accomplishment. They are on stage, receiving accolades or awards for doing something in spite of their limitations. It is always inspiring. But have you ever noticed there is usually someone standing behind the wheelchair, looking a little tired or worn from the journey, that got them up, ready and to the event. The caregiver…

Prior to 2005, I’d never heard – or paid attention to – the term “caregiver”. Funny how one tunes things out that don’t directly apply to one’s own life. Caregiver – that sounds like nursing home talk. Can’t apply to me. Get Annie back on her feet and then I’m good to go.  Shock, denial, “pressed into duty”, acceptance, resolve and then possibly reveling. I’m somewhere between four and five. I was never cut out to be a caregiver.

But caregiver I am. And while my selfishness didn’t exactly equip me for the role I seem to have figured it out. Annie works very hard at removing tasks for her caregivers. No, I don’t do this alone. We have some great “co-pilots” that come a round for a few hours a day and take care of errands. They team up with Annie to organize chores and shopping details. And, I have gotten past some of the “codependency” issues I was dealing with.

I felt terrible about leaving Annie alone. Even if I knew she’d be fine I felt I had to be there, make all the decisions and micromanage her recovery – even years later. It was silly. She needed time alone. Sure there were some mishaps but overall it was occupational therapy at its best. She moved forward because I wasn’t helping anymore. And we both needed the space.

Give the person you care for some space.

Five Years Later...

The resiliency of the human spirit is amazing. I can remember a couple times where I wanted to – and did – run screaming through the woods from frustration and grief. But mostly I remember the progress. Medical studies on the brain have come a long way in the last five or six years. Unfortunately, it is mostly due to military injury. But I am completely amazed by the brain and its possibilities.

Annie lost 40 -50% of her brain. Gone. Yet she is writing, learning Spanish, dealing with contractors while I travel and generally running things. Sure, there is apparent damage in mobility and thought processes, but nothing like we were lead to expect. Elasticity. Great word.

Tough love, Coach, Sergeant Major and a few unprintable monikers have preempted “Bob” from time to time. Never let up. Never quit. Never admit defeat. Five years later, I’m making trips to the Middle East and Annie is on her own. We did it through hard work and determination. Patience is not one of my virtues.

We made a plan. First order, stop the bathroom support. Nothing in ones wildest dream will kill ardor faster than the most private of moments. But someone had to do it. Took a few months, but we then had something else to work on. Second order, ditch the wheelchair. I got so tired of loading and unloading that damn thing, shipping it, cleaning it after it cruised through everything dropped on the ground, and the only good news was my shoulders never looked better. The method, “If you won’t walk we simply won’t go,” started Annie walking. It took many months, but she did it. She didn’t want to be left out.

I think we tend to marginalize the handicapped, or “handicapable,” as we now prefer to say. I know I used to avoid eye contact, change sides of the street and generally avoid any discussion with someone in a wheelchair or obviously impaired. I didn’t want to get in a conversation because I was afraid of the dialog. I learned. I’d heard so many stories about significant others who split when faced with a crisis like this, I was determined not to be one of those people. I have been rewarded with seeing something I never thought possible – an example of human resilience at its very best.

Life Altering Event

Did you know that each year over 26 million Americans care for an adult family member who is chronically ill or disabled? For the most part, caregivers never want to be a caregiver.  It is a non-paying, often thankless job. This is an anonymous poem that to me, as Annie’s caregiver, sums up a caregiver’s life, once put in this role (author unknown).

You put your own life on hold
You give and give all you can
Until you are given out
You get tired and discouraged,
Sometimes angry and grief-filled,
but yet you try your best
and to despair do not yield.

As stroke survivor Annie’s caregiver, I plan to use this corner to communicate tips for being a caregiver that are practical, authentic, helpful, optimistic, and share the humorous side. You get a different person back from the hospital. The elasticity of the brain will let the old and new personality develop but you have to be patient. I am not a patient person. I think I was a good coach for Annie. I had to get our lives back to a level of “normal” and go back to work. The financial side of these events is devastating. She responded well – with some bumps – and is once again running he house, getting back to work and managing on her own. It is beautiful to see. When you are “deep in” the process it is not so beautiful – but you have to remember they are doing the best they can.

And there can be a lot of joy. As you read my first hours keep in mind that Annie was 48 and in excellent health. She ran, weight trained and treated her body with respect. The last thing on my mind ever was that she would fall victim to an injury of this nature. 48 hours later the last thought in my mind was how long it would take for the brain to “balance” again after an attack like this. The term stroke is a bucket. It covers every level of brain attack. Annie had a 10 on a scale of 10. If it weren’t for her brother John knowing what to do this column wouldn’t be, and neither would she. Radical intervention saved Annie two days after the event.

Here is what happened almost exactly five years ago:

I knew it was a stroke. I knew it the minute I turned on the light. I just didn’t know why.  Within seconds, truly I’d dialed 911. As I spoke I could hear the sirens in the distance. Amazing people. Firemen first. Annie was half naked on the floor. She had on a pair of my boxer shorts. Her left side was flailing as the tissue was realizing the blood flow had stopped. She was talking. The firemen covered her out of their respect. The EMT guys and gals crashed through. Noise. Stretchers crashing in. Equipment being open Action. ed. Blood drawn, EKG’s (I think) hooked up. Action, action, action. And Annie there on the floor flailing. A sheriff grabbed me and pulled me back so the EMT’s could do their work. He was awesome. I was in control of my emotions but barely. I knew we were in real trouble.

And then they were gone.

The sheriff stayed with me while I packed a few things. I got dressed. He made sure I was in control and then he took off. I was alone. I called my brother, Tom.

I was hopeful as I got into Annie’s god-awful Scion XB. It was like climbing into a joke in the most serious moment in my life. Bright yellow. Mockingly upbeat. I drove to the hospital. Annie was getting a CT scan as I arrived.

Back to action.

Tom was on his way. I knew not to try and stop him. He wouldn’t. I wouldn’t have either. Dr. John was calling. We were waiting on the only neurologist who worked nights in Austin. A bad time and place for strokes, Austin simply had nothing. I learned a lot about this later but at the time it just seemed like bad theatre. They couldn’t get an accurate CT scan. Annie was flailing too much. They didn’t want to give her the tissue plasminogen activator (TPA), as it would cause her to bleed out. We were telling them to take the chance. Time was blazing by and running out.

I’m in t-shirt, shorts and flip-flops. It is freezing in the ER. I am pacing a few steps, looking in on Annie and talking on the phone. Focus. Fix Annie, go home. I had no idea that the rest of my life would now be so different from expectation. If anyone had told me I would have said “no way”. Within hours I knew it was a mess. Then I knew it would be different. My parents were coming. Annie might not survive the night. Everyone was mobilizing. Tom did it.

When do you know you’re toast? When do you know that nothing will ever be the same? When do you know that everything you’ve held to be important suddenly wasn’t? I knew it in 48 hours. I even knew I’d taken on, for the next few years, a purpose driven life. So much for the happy dilettante.

Did the next few days define me? Some say so. I was on my game, decisive, cool in the crisis and handling it all. I’m really good under pressure. Always have been. Oh yeah, did I melt? You bet. We had a chair in the hall. They were apparently getting rid of furniture and it was stacked. There was a chair sitting hidden where we could let it out. It was outside the ICU and away from the gathering camp in the waiting room. Nappy looking old thing. Rule one – Annie cannot see you cry. If you felt it coming on, get out. We dragged a few out when they cracked. Here’s the chair, sit down, let it go. I used that chair several times a day for the whole time Annie was in the intensive care unit. So did Tom. I don’t know all that used “the chair” but we were glad it was there.

My beautiful Annie with her brain spilling out of her head. Half her head shaved. Half her face limp. Machines attached. Pumping air. She’s on Diprovan. “Milk of amnesia” the nurses called it. Surgical patients get it so they forget the process. I didn’t get any. I’ll never forget. She won’t make it through the night. Prepare yourself. Yes she will, she’s tougher than you can imagine. She not through torturing me yet – kidding. She’ll never get out of that bed. Yes she will. You watch.

I could tell myself this stuff because I believed it.

I am not a religious person. I am a spiritual person but organized religion wasn’t for me. Ever. Of course many would say organized anything wasn’t for me unless it made money. But I am very spiritual. I believe we are all connected by something. It flows through us. It makes us human. I did experience something that morning of May 19. It was so powerful it jolted me upright. I knew what it was, the phone reports were pouring in. Everyone was getting more and more friends to pray for or just think positive thoughts about Annie. I experienced the power of a thousand people thinking of Annie at the same time. I could not imagine that much energy. It flowed through me. It saved me. I believe it saved Annie. We were going to need a lot of this in the next seven months.