Urban Flowers - and other lessons learned

I built an arbor for a commercial plant operation this last summer. It took me longer than I expected because I had to build it twice. It isn’t the first time I have had to do something twice – or more – when it met neither client’s aspirations nor mine. In almost every case the metal generally can and is repurposed into something else. And generally it is a progressive lesson or learning experience. Like care-giving, you have to live it to know there will be progressive learning and lessons twice or more learned. Perhaps as General Patton (as played by George C. Scott) allegedly said “I don’t like to pay for the same real estate twice”, lessons sometimes are expensive.

In this case I am repurposing a couple thousand bucks worth of steel tubing. For the project I chose steel tubing rather than pipe for strength and weight considerations. I envisioned tree boughs linking through the rings and the tree becoming guided sculpture and the sculpture/arbor becoming one with the trees. The client saw the rings and looked at me in horror. Apparently I didn’t think about the rings cutting off and chocking the tree limbs. But once again, like care-giving, I’d set aside patience, jumping right in before considering the consequences. An arbor requires patience. Wishing a tree forward will not make it grow any faster. I went out and visited the installation last week and saw that the tree wasn’t cooperating and growing at a rate that would engage the arbor anytime soon. The two remain separated like uneasy relatives or in-laws on holidays. It will take a long time for the trees to become one with the arbor and so patience, nurturing, and limb training will be the point of the study for the next several years.

I get to reset my expectations…sound familiar?

Meanwhile the original arbor, now reduced to pieces by metal cutting wheels, starts a new life as a “skeletal” frame for a full-scale (very large) creature on which I will report appropriate progress. And the limbs and rings, they quite by accident became an “urban flower”.

Caregiving and Shipbuilding

I had some time this morning to indulge in what I love – making metal art. Today was ‘blacksmithing” a large section of metal cut from a pipe. The piece of pipe was originally intended for the giant fish that went to the desert. The plans changed and the pipe would up sidelined into art supplies. It is 3/8^th’s inch thick mild steel. Radiuses intended to be a pipe rather than a set of horns, I had to both use the direction of the curve and work backwards away from the curve. The primary reason was I already had the material; the second reason was it saved me at least one set of heated curves.

Heating and bending metal of this thickness takes some muscle – and a lot of acetylene. It has to be red hot then carefully coaxed into position. It takes a lot of patience. Some time ago I watched a documentary about Korean shipbuilders. They were bending very thick metal into the bow pieces for a large transport ship. The metal was almost two inches thick and it took two guys to do each piece. They had a huge acetylene torch and a water hose. The torch was to heat the metal and the hose was to cool it. They coaxed the metal very slowly into the large bow shapes of the ship. Obviously they didn’t use this method to build the whole ship - only the bow pieces. Those pieces needed to be very strong. They had to bend the thick sheets into shapes and they had 1/8^th to 1/16^th of tolerance for the finished part. The finished pieces looked a lot like Richard Serra sculpture. They weighed thousands of pounds.

When asked about the range of tolerance they workers wanted, the response was “we want it to be exact”. The lead guy said 1/32^nd off was too much. What does it take to do this – “patience, discipline and a lot of time”. My process today was slow and deliberate. I ran out of 0² before I could finish the part but I had enough time to get it to a point that looked sort of like a finished piece. I was very patient. Coaxing a brain-injured person back requires patience. Sometimes I show it other times not so much. Thinking about those Korean guys gave me pause. They said they loved what they were doing. I feel the same when care giving is going well and we are making progress. Much like getting a piece of art just right, getting my survivor feeling good and good about herself takes discipline and patience. In art there is a lot of allowance for tolerances. Perhaps in care giving that is also the case.

I enjoyed bending the metal today. It was very satisfying. 

"Revel in what you can do"

This topic comes up a lot. Wanting to lead the old life and go do things we did before. Unfortunately the range of options is not what it was. Ambulation is much slower and our survivors tire quickly. We therefore look for what we can do. Lately we have been to some museums. The Air and Space Museum at Dulles Airport during the summer and the Museum for Contemporary Art Chicago over Thanksgiving. Both are places I really wanted to go. Both were handicap friendly. The Air and Space museum is so large she wouldn’t have been able to walk it. They had some marginal wheelchairs that did the trick. We “ooh’d and ah’d” quite a bit there and at the MCAC.

I bet there are lots of these now. Complete with loaner wheelchairs, elevators and plenty of ramps. Annie might not get to see the Meteor Crater or walk the Pat Tillman but we can be sure she gets onboard for the museum tours. Next stop Fort Worth and its renowned collections.

So we’ll not do the Grand Canyon again together and hikes are pretty much out. We’ll adapt. She got to go hunting with me and that didn’t slow her or us down. Today she mentioned fear of falling. The concern is breaking something and becoming too much of a burden. She doesn’t want to go into assisted living. I told her that wasn’t a bridge to contemplate right now. My mantra is find new challenges – and revel in what you can do!

It's a wrap

Hours on the road are good for contemplation. I cannot say enough as a caregiver how good the break is. “Take care of yourself” was the advice I heard at the hospital in the beginning and have heard since. You’re no good to the person you care for if you’re worn out and bitter.

I walked the Pat Tillman Bridge that spans the Colorado in front of the Hoover Dam and now links Nevada with Arizona. This route used to go over the Hoover Dam. The roadway atop the dam would seem very tight by today’s standards. I did side track and drive over it. Neat. The Bridge is the current rage. Both good and bad. Sorely needed it is a modern four lane crossing distinctive for the length of span of poured concrete. Truly a sight. Even better to walk across though the inevitable feeling of sorrow for a life cut short – Pat Tillman – and the circumstances of his end do come to mind. I tried to stick to the cool engineering and incredible grace of the design. The bad is complaints about cost. Gotta have roads…

The morning was cool and crisp, the tourist buses were just starting to show up and a seemingly endless line of helicopters circled past. I grinned thinking the pilots were probably chatting away with each other about maintaining spacing with the seats full of people going “wow”. By the way, the tour bus trade is run by eastern Europeans. I asked several of them questions and was amused by their accents. A country of immigrants. On to my primary target – The Meteor Impact Crater outside Winslow.

The red rock deserts of Arizona never get tiresome. So beautiful. So empty. It was Veterans Day and the radio full of stories. The balance between the hero’s of WWII and the despair of the Vietnam Vets made for good listening. Lots of guys in fatigues. Old guys (looked a bit like me) with various campaign hats on the back shelf of their Buicks. “Praise God but pass the ammunition”.

The crater rises up out of a dead flat plain. Because there is so much remnant volcanic activity in the area it was assumed the crater was volcanic for a long time. Once it was realized it was impact (quite some time ago) it was like “duh”. As you come up on it the impact is clear – no pun intended. What a sight. Worth the deviation to Highway 40. I’ve always wanted to see it. We flew over it several times on trips to California and the Grand Canyon. But standing on the edge is what it’s all about.

I was completely satisfied by the experience. My trip complete, I headed for home cheerful, rejuvenated and ready to get back to work – on all fronts. 

Pacific Coast

I had a goal and a mission for my road trip. The goal was the LA County Museum of Art and the pending installation of the 340 ton rock. My mission was to reenergize creativity and take a break from care-giving. I’ve stated many times how I feel about care-giving so I’ll spare you that. Instead, check out Ariel Kaminer and The Ethicist column in the New York Times today (Sunday 11/1). She says it all in the last paragraph of her response.

But back to road trips and missions, I will do this twice a year if I can make the time. Maybe it won’t be 3500 miles in eight days but there will be a goal and a mission.

Here is a shot through the fence at the construction site at the LACMA. Moving a 340 ton rock from Riverside California to LA costs $1.5 million bucks and takes a special trailer with 200 wheels. My friends, Virginia and Tom, facilitated my getting to the LACMA and seeing the site. Tom, because he saw beauty in one of my art pieces and Virginia, because she knows the “surface” world of LA streets like the back of her hand. She likes the art too. Virginia made getting about LA a snap. Traffic on the famous freeways backed up? No problem, drop to what the call “the surface” and time is recaptured. Great friends and wonderfully welcoming. The original sculpture is fixed, another is delivered to some new friends, and we are all happy. I saw the worksite – hard to capture on film – thanks to the generosity of a Security Guard who understood my artist’s plight. I’ll go back when the rock is in place.

A side note, the La Brea Tar Pits are right next to the LACMA. 30,000 skeletons have been pulled from the goop. There are active dugs going on right now. It is so impressive that one could spend a day there. And yes, they are still bubbling tar and methane as they have for eons. Another surprise. Another joy.

And let's not forget "Smoke" by Tony Smith. Something else I have wanted to see for some time. Look this one up. The story is really cute. The piece is spectacular.

Then it was on to Las Vegas…and more adventure.

Windmills

As I came through Coachella and headed west into California I came through the valley of windmills. Mesmerizing motion, a sea of whirling blades and stunning design. Now I understand that they are not so efficient. Not because of high maintenance or cost but because where the wind is, people aren’t. People don’t want to live where it is windy all the time. So you can make plenty of power but there’s no one there to use it and transmission lines are terribly inefficient. Still, we’re trying – and they really are beautiful examples of engineering. At least to me. 

Western Arizona

The day started well with bright sunshine, birds chirping, hummingbirds buzzing about and a Starbucks at the first turn. I10 was empty except for a few truckers. Al the roads of the West are 75 and 80MPH – where have I been – and making good time is easy. I noticed a road alert that I10 was closed at some exit near Phoenix. Right after that there as a divert opportunity to Hwy 8 and 85 to bypass Phoenix. SO GLAD I DID!

Hwy 8 was a couple miles ahead. I turn on to it and I was in a world transformed. No cars, few trucks and an open landscape that defies description. Saguaro cactus as far as the eye could see. And that exquisite morning, golden desert light. Magic.

But Gila Bend will bring one back to earth. It is located in “beautiful” Maricopa County, Arizona home to the renowned Sheriff, pink convict outfits, tents for the inmates and the epicenter of immigration reform. I went into town looking for a breakfast taco. Imagine western Arizona with its population mix and no breakfast tacos. Burger King in Austin serves breakfast tacos. Following the speed limit carefully, I skedaddled right on out of there. 

From the road

Fight the Bacon Boy “Gotta get there” all I want and I still went 900 miles today. I have said to anyone who will listen that I love the American West. Simple, vast, beautiful, full of interesting travelers and all the roads are 80MPH. I have a van full of metal art and tools, a book of maps and the desire to come out of a week of this with more than just a road weary body and a lot of miles under my belt. I seek inspiration, perspiration and new ideas. I expect the installs and deliveries to take me to cool spots and interesting people.

Being the incurable optimist I threw in a couple extra pieces. We shall see.

I’m off to a good start. I went from Austin to Tucson today because of dread - robbery. My truck was stolen for the tools onboard back in January. I thought about sleeping in the truck but – well – I may be a little old for that. When I arrived in Tucson I stopped at a gas station and fired up my laptop. Hotwire came through. For a hundred bucks I got a room at a lovely resort with extraordinary security.  A cold local brew and a good nights sleep. Then back on the road.

Road Trip

There is prep going on to take a road trip. October was slow on the business front. Middle East is on hold. Several things on the healthcare front are in motion but not committed. What to do when times are slow – road trip? A friend of mine said she admired my ability to keep moving. When “stuff” got difficult or times toughened I always kept moving. I told her I was like a shark, stopping means death. Stopping means thinking. Stopping means something could catch up with me. No stopping. If I am moving there are always new possibilities.

So I’m going to California for a couple days. I’m going to drive. I have metal, several pieces, tools and a rental van. Will post from the road. Adventure. Open space. New stories. I know something interesting will happen...

On being lured in...

The different person will always be there.  You want the “old” person to come back. It’s called hope. It is what drives us. But they will not be back.

And you’ll have to learn to love the new person. 

“Maybe it is less about grief than remembrance” – Patti Smith

I stumbled on an article about Patti Smith (journalist, rocker, mom, rocker, photographer and still a musician) and her photographs. She still does music. Though I was never a true fan I have always found her fringe lifestyle interesting. The article is about grief and passing and those who died before their time. It touched a nerve.

She goes on to say “grief is an indulgence and it doesn’t serve anyone” a statement with which I agree. I agree because I have delved into grief too much. I have found there are several of us who “grieve” for our lost pre-brain injury lives. One friend sent me a note today referencing Bruce Cockburn’s “Pacing the Cage”. He feels a little contained and we have had several discussions (and I a few blogs) about the grieving for the lost person and “easy” lifestyle we once had. But Patti is right about it not serving anyone. It just puts us in a rut.

When someone dies at a ripe old age the most interesting eulogies are the ones that celebrate life. No sadness or grief. When someone goes prematurely it is different. Our stroke and brain injury survivors are reminders of when we were not caregivers, but rather we were partners. It is hard for both sides of the equation not to miss that life – after all this new life is a lot of work for both. Still, it doesn’t serve anyone to grieve. I like that, if you don’t like the process change the dialogue and the process.

I don’t think for a minute that with a snap we can forget about our old lives. We can’t get them back. We have to move forward. Remembering is good. Annie – as I mentioned – used to have a famous laugh. Once going she could turn an entire restaurant agog. There were times that we’d get her going and it would be infectious. There were times when we wanted to grab a pillow. I remember those times with fondness. Last night Rebecca and I got her going on the way home. She was laughing so hard I think she was in tears. Haven’t heard that in a while. Good memories and a better sign for the future. 

So do I really apply these bits of wisdom? The book Switch: How to Change when Change is Hard, Sarah the nurse, Patti Smith and grief being a wasted emotion… I think the answer is “yes”. It is incremental change of attitude and incremental behavior modifications that turns into a better result over time. Does this caregiver work ever get easier? Probably not, but the energy it takes to dwell doesn’t do much for progress either. Turn that energy to remembering the good times and how to make more of them.

On a side note, my sister was here last week and one of Annie’s sisters came for a couple days. Both sisters are really good for Annie. They are also good for me. Thanks Liz and Rebecca!

A Conversation with Sarah

This last week I spent three days with 7000 nurses. 7000 people who care for others. It was the ANCC conference in Baltimore. As you might expect the ratio of males to females is still skewed towards women – like 98%. So 6800 plus women were learning by day and partying by night. It was a lot of fun. The focus was Magnet Certification. Magnet is a quality/collaborative designation to a hospital of nurses and physicians working on a process that yields a better product. The product is, of course, a better patient outcome. It is also peace of mind for patients and relatives that the best care is being given. It is additionally an award that instills pride in the workplace. I learned all this in one conversation with a delightful Interventional Radiology nurse named Sarah.

I have struggled for five years with a question: What more could I have done for Annie to improve her outcome? I’ve heard it called “survivor guilt” and I have tried through therapy sessions (though very few) to reconcile the nagging feeling that I should have known more and taken more action. I should have known where to send Annie for the best care. I should have known which hospital provided the best stroke response. When to airlift and how. But the truth is it wasn’t even on the radar. How would one ever expect a perfectly healthy 48 year old woman to have a massive stroke. If either of us was going to have an incident it would have been me. After all, I was the risk taker and possibly the one with the bad habits. But the guilt still permeated my downtime. In the back of my mind I felt there was more I could have done. So my conversation with Sarah drifted to this subject and Sarah knew a lot about it.

In the last five years or so great strides have been made in Interventional Radiology. New tools, devices like shunts, doctor designed special tools, and probably most important a host of new techniques. Unfortunately the equipment and its use remain fairly narrow. In Texas, Houston and Dallas have stroke centers that are state of the art. As one moves further out the equipment tends to be there but the expertise thins. Interventional Radiology in Austin doesn’t match the larger cities. She also pointed out that the expertise in diagnosis has only really developed in the last five years. She also noted the outcomes, while varying widely, are also just beginning to be chronicled. I told her of Annie’s successes and she was in awe. The professionals that do the saving work rarely get to see the long-term result.

Her last words were “Stop beating yourself up”. I’ll try. 

Moving backwards in time

This region has a very positive effect on me. Aside from a slightly slower than I'd like week the interactions all around were so positive. The regional people have positive mental attitude and the starkness of the environment provides a sharp backdrop that brings this attitude to the forefront. I suppose it is a little like a backdrop in a photo studio. Personalities shine through without the noisy typical background I'm used to. Spare, spartan, contrasting... not sure of the adjective but I'll work on it.
I woke this morning about 2AM local and could not get back to sleep. I had to leave the hotel at 4AM anyway so I got up. Probably my typical alarm anticipation coupled with time zone change. Abu Dhabi is an hour ahead of Doha and the flight is 40 minutes. We sort of arrive before we leave. But I noticed a photo on my phone when I awoke.

Annie had been over to Austin's City Hall and checked on Whirling Beams II. It looked so cool to me that my mind was instantly transported from work challenge to art challenge. She is aging well and stands out so nicely from her lower stark but upper "noisy" background. Contrast.
I'm reading a book on change management. I'll share the title when I have finished it and have begun to apply what I have learned to caregiving. The book discusses change and how to make it happen. Much like my process in building sculpture, rebuilding a person who's had a "brain attack" could be viewed as change management. Bringing desired change requires different methods. The book delves deep into what brings about behavioral change. It contrasts the way I/one may have been approaching a lot of things with some "what ifs". I'm going to apply it to caregiving and I'm going to apply it to art. Never too late to learn something new. Our survivors do it maybe we caregivers can too.

I heard it rained in Texas

A friend sent me a note that it rained in Texas. So glad. I’m in Abu Dhabi where it never rains and, of course, that means there is very little to burn. The wildfire activity/risk in Texas will now die down. Whew, made it through another season. Made it through most of another trip with little worry.

And a trip it has been. Management changes causing an uproar and managers stumbling over one another in a quest to move up in rank and favor. Me, I’m a contractor so I get to sit back and see if my contract is picked up. So my thought for today was whether I am changed by the experience of dealing with emergent care, subsequent care-giving or whether I have always been too much of a maverick for corporate life.

Since I have picked up the responsibilities for our household income I have had to change my operating mode. I am a little more beholden to the paycheck than I was when we both worked. I could take risk that I can no longer afford. Annie, on the other hand, was a corporate dynamo. She reveled in the meetings, the interaction and the competition. It is her greatest frustration that she is no longer in the game. Change and dealing with change has been a bumpy experience.

But is it because change is forced upon us that we look at things differently? Aside from the terrible “change trigger” I would not want to have had the last five years be any different. Well, maybe a little. Maybe given the choice I would have resisted change. I’d have missed a lot of incredible experiences – delving into art, going to Burning Man, the unbreakable bond in my family that was always there but came to the surface and remained, and the new friendships we have formed. These experiences are so more valuable than accumulated wealth. And yes, they leave me changed.

As I am awaiting instructions at a luxury hotel in Abu Dhabi, I have a few minutes to reflect. What are the positive points and how to grow them. What are the negative and how to discard quickly anything that blocks my path. I am in doubt that my contract will be picked up by this company. Too many cooks right now to make soup. There are lots of other companies. But the positives of the experience in the Middle East and the opportunity to come back here and work have me on a quest. I might not have thought that way 5 years ago.

I'm gone again

Work calls and I am gone again in 48 hours. Back to Middle East and working with the national oil companies. I’m leaving with a little more confidence this time than last but still with trepidation. Annie will be on her own for two weeks and “running the place”. She’s up for it – though not without some nervousness too. Wildfires in the region have us on enhanced awareness. Dry, no rain in the forecast and lingering drought place us in the middle of a tinderbox. The good news is her friends will support her and the neighbors are always on the ready.

Annie rises to these occasions with notes to herself, daily reminders and reliable “co-pilots”. She steps up her exercise routines so she feels fit. She reaches out to friends to do stuff she might not ordinarily do. We both prep the house. I check and set all the automatic systems, refill anything empty and hopefully don’t forget anything. Regardless, life will go on here in my absence and it is good for both of us. Breaking cycles can do a world of good.

Some cycles are good. Repetition of exercise, reading, writing and solving challenges. Discipline to get a blog out. Mental exercise to respond to questions and opportunity is in no short supply. Yes, she does lots of cognitive work and most of it sticks. If Annie asks me twice I answer – it’s just easier – on the third I say “What was my answer the last two times? “ then it sticks. If she’s really interested in my response it sticks the first time. Some stroke effects are only previous “conditions” amplified. Husbands and wives never tune each other out do they? Annie is really good about her daily cycles. I do not have to coach anymore for the things she’s found doable. My favorite Annie response is “Let me figure it out”.

My cycles. Guilt. Shoulda, coulda, woulda. Do more, do less? Maybe it’s time for my cognitive work to pick up a bit. Practice what I preach. In the long run there is good progress and hope abounds. In the short term it is time to pack.

Leave for a while – don’t fight it out

Caregiving is wonderfully rewarding and at the same time terribly frustrating. The person in your care is frustrated, afraid, sometimes confused and at all times aware they cannot do the things they used to just “do”. You, the caregiver, have many of the same emotions though they may play out differently. And then there is the co-dependency issue. I like Wikipedia’s definition and discussion on the topic - http://en.wikipedia.org/wiki/Codependency - as it fits my own view. Co-dependency isn’t always bad it is just something to watch for and understand. And, I am guilty of it.

I worry about every detail of Annie’s day. No need to as there is little I can do while I’m away from the house anyway. Nevertheless I do worry. If I don’t hear from her or from a “copilot” and it builds tension. And it takes time. That frustration builds and while one really tries a harsh word or irritated response or maybe it just that we feel after the fourth explanation it is okay to “snap” and the fight ensues…

Oh and of course it isn’t fair to fight it out with this person who has suffered so much. But we do. The one thing we can do that our survivor cannot is leave. Not for good but for a while. Leave. Turn off the phone. Go somewhere and collect our thoughts and ourselves because it simply isn’t a fair fight. We’ll get through this small issue – and we know we’re not really fighting over the “big one” – and the terrain will smooth out. But we want to exercise control and resolve the issue! Get this issue out of the way and be able to get back to doing what most of us have to do – go to work. Not always that easy once you’re “in there” the fight escalates and we all prefer to be “right”. Stop, breath deep, leave. Nothing is going to happen in the next 30 minutes that will make any difference.

And then there is the reward…

“Doing nothing is often a good strategy. Saying nothing is always the best strategy”

Taking care of yourself as a caregiver

I was never defined by flying but it did add a bit of swagger to my persona. Flying planes has been a casualty of Annie’s injury. It is not her fault. It simply became more trouble than it was worth to get her in and out of the plane and once we went somewhere there was the added issue of ADA “stuff”. Gradually my opportunities to fly dropped away and I was left only with the bills. We sold the plane a couple weeks ago.

Wednesday I got a call from the mechanic who did all the maintenance on our plane asking me if I was available to test fly another Aerostar. There are very few Aerostars out there so few pilots with the proper credentials to test fly them. My brother thinks I might ought to drop test pilot from my repertoire but I wasn’t quite ready. He has good reason. The last time Shaun, A+P mechanic, asked me to fly a test was this same plane at the end of last year. We narrowly averted disaster when on take-off the right engine caught fire, burned up the electrical system, and shut the engine down. Good thing we had two of them.

As a result of the engine fire the right engine was remanufactured to new. Shaun asked me if I would give her another shot.  With some hesitation and a very high level of nervousness I said yes. And this time I took along a competent copilot. So last Thursday morning we went out, ran up the airplane engines and took her for a flight. She was really badly behaved. We limped out to Lampasas and back with the right engine suspicious and the left engine not making full power. Spooky all the way.

I detailed her flaws when I got back and said farewell thinking that’s the last I’d see of her and Aerostars. Not so fast. The phone rang last evening and it was Shaun. “Bob, we fixed everything. She’s perfect. Can you fly her one more time?” Oh, yeah. This is where the old Bob kicks in and before I could think I said yes…

To make a long story short it was a perfect flight. I’d taken to calling the plane the Hell Bitch after Woodrow Call’s horse in Lonesome Dove. Anytime you dropped your attention she’d sneak up and bite you same as that fictional horse. Today the Hell Bitch is the Docile Dame and another wild pony is tamed. I feel pretty good too.

You need to take care of yourself and have a little fun along the way.

Caregiver break...

Annie is off on her own again. The last NIH visit for a final assessment. I get a couple days off. Nice. Good perspective moment to catch up on thoughts and work on projects. I’m installing an arbor over the next two weeks. My contract work is slow this time of year (Ramadan) so suddenly I have time on my hands.

Sidebar tip for the day: Want to have your survivor not ask you the same thing multiple times? Get them to repeat it back. Then when they ask again you can say, “What was it you told me the answer was?” Works like a charm. Lowers frustration and blood pressure. Your friends will think you’re being mean but they don’t live it everyday. “You’re not helping” said with a smile usually stops the stern look.

Annie also uses her iPhone as a form of memory. She can catalog her day, store her thoughts and remember communication. Again, friends will say “You sure text a lot” and a smile usually clears that one without further comment. I doubt Apple has a stroke app but they should. Quick thoughts and reminders. It is a godsend for when Annie travels. A quick note. A short “I’m okay” and the day can progress. It is a wonderful world with all this technology. Without it she’d be home bound or worse.

Oh, and there is no safer place for her than the airports. Once released into the system she has dozens of people offer support and care. And they’re all screened! The airlines do a very good job with the handicapped. They get it. And they get her out and back safely. I need to think of some way to thank them.

Sunday the 24th

It’s Annie’s 54 birthday. Milestones in time always bring flashbacks to the time in the hospital. Cannot help it, they are as current in my mind as though it were yesterday. Annie is on her stationery bike reading a story about a woman waking up in intensive care after a car wreck. I am reminded of the sounds, lights and smells of the intensive care ward at Seton Hospital. I’m sorry, but it is a defining moment for me that I want to forget and cannot. We broke every rule of the intensive care ward thanks to a very dear friend who was in a position to pave the way. I slept in the room. We stayed through sessions others were thrown out of. At one point I apologized to a head nurse and she said, “Why apologize now, there are no more rules left to break?” It was a terrible time for everyone – but one that brought us all together. For the most part we are still all together as a result.

I’m glad Annie turns 54 today and is here to share it. It makes my “pity parties” seem petty compared to how hard she works everyday to improve her lot. Doesn’t mean I’ll give up the occasional pity party as I will never relish the role I’ve been handed. But for today we’ll focus on Annie. Happy Birthday. 

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.