“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.