Wednesday, April 29, 2015

Listening....Sort Of

I had a conversation with my son the other day and I hung up wondering, what Marty would have said to him, did I do the things she has taught me over the years or did I do what I too often have done, in conversations.  It happens a lot; I step back, replay a conversation and reach for the things Marty has taught me.  

When you are married to a psychologist, you better remember your talks.  I do.  I remember listening to Marty and interjecting with my best direction and most trite advice.  I hear her telling me, demanding, that I not tell her how to fix her problems.  I remember her chaffing at me trying to tell her how she feels or that what she is feeling is a small thing; “it’s no big deal”, I would say, stupidly. 
She would say, “Well I’m not experiencing a little thing; don’t make me convince you how important this is.”

She was right of course, we can’t tell others how to feel, we can’t tell others how to experience life, we can’t tell others it’s not a big deal if it’s a big deal to them.  That demeans how they feel and man it used to piss Marty off.  I was really quite good at that.

I listened to my son and I heard myself offering platitudes and banal stuff.  I found myself reaching to my fallback position of offering platitudes and sports metaphors, neither of which really helps but it makes me feel like I am doing good work for the world.  

Remarkably I caught myself and tried mightily to quit offering brilliant gems like, “Short time, long life,” you know where you try and bring perspective.  That’s almost as brilliant as, “It is what it is.”
After we disconnected it occurred to me I really was doing one of the things Marty taught me to do in our relationship, listening.  It’s not as easy as it sounds because I’m a fixer and I want to make things all better, I want to participate in a solution, I want to tell you what to do.   

I used to do this with Marty as she would unload her day on me and I would offer sage and learned advice.

Marty, “I don’t want you to fix it, I want you to listen to me and understand me.”

Me, “But I’m just trying to help.”

Marty, “You can’t fix it, I want you to listen and understand.”

I got it.  Sit and listen, really listen and make sure you use affirming words indicating you haven’t drifted off to lala land.  And, please, don’t offer a cure unless asked for a cure.

That’s not exactly it either, using the affirming, listening words is a good thing, but there is that whole understanding thing, you have to listen to understand, you have to pay attention, you have to stop thinking about what pearls of wisdom will come flowing from you long enough to really listen and understand.  

Daughter Erin, the frequent recipient of my pearly wisdom, has tried to coach me up too.  She hears me say too often, “Well, you need to….”  Yes, I admit it I tell people what they need to do.  Marty did that too.  The funny thing is she hated it when I did that to her or our children. 

Erin, the social worker, said, “Try saying to people, “It might help if you”,” instead of, “You need to….”  She’s right of course; she’s her mother’s daughter.

Truth.....what I must do, what I try to do is listen, that’s what Marty would have tried to do, she would have listened, she would have ferreted out feelings, thoughts, ideas, possible solutions, all kind of things.  She would have encouraged conversation, listened and drawn out information and helped whoever she was talking to center their own thoughts.  

Then she would have said, “You need to….”  

She taught me how to do it; that doesn’t mean she necessarily believe just listening applied to her.  She still says, “Rules are for someone else.”

Monday, April 20, 2015

My Diary

I love a good pen, one that feels solid in your hand and writes smoothly.  My kids gave me a new fountain pen and journal for my birthday and I have been busy updating some scribbled notes which show the arc of our history over the last ten years.

Since we came home from the second stroke I have documented in my own patented sloppy manner all of the trips we have made to the hospital since 2007.  The pattern has definitely changed for the better, for a lot of reasons. 

When we came home after the first stroke in June of 2005 we went to a number of doctor appointments but only returned to the hospital one time, in July, to get Marty’s bone plate in her skull replaced.  I say that so easily now, it was a real struggle at the time.

When we came home in June of 2006 after the 2nd stroke we were in the emergency room that same month fighting off what become an endless series of infections.  Marty was admitted to the hospital three times between June and December of 2006.  

I wasn’t sure I was ever going to be able to be the kind of care giver I wanted to be or the kind of care giver Marty needed. I was ready to give up because the medical issues were overwhelming.  It wasn’t just being in the hospital, it was the worrying about getting to the hospital, it was worrying about when to go to the hospital.  I was not qualified to make those kinds of decisions.

In 2007 things got a little better.  We went almost a whole year without being at Providence Hospital and then the fall hit and respiratory infections hit hard, we were there once in September and twice in October.  This is when Great and Wise recruited a younger prettier Great and Wise pulmonologist to help with respiratory issues.  We got a vibrating vest, a better understanding of respiratory hygiene and some new meds.  We went eight months before we went back again.

The following year, 2008, we went back in the hospital three times, clustered in the summer for urinary tract infections and the regular fall visit for an upper respiratory thing, it was about here a genius respiratory therapist recommended we start using a BiPap machine, similar to a CPAP to help Marty breathe better at night, it helped.

2009 was a seminal kind of hospitalization, this was one where Marty got really, really sick with an upper respiratory thing that developed into pneumonia.  I thought I was going to lose her on the night we first took her to the ER, she was weak, was having a hard time breathing and her blood pressure was very low.  I think this one got Great and Wise too as he asked that fatal question, what are her wishes.

From this episode I learned how to deep suction and things changed for the better.  It is an invasive procedure; it is uncomfortable to the extreme for Marty but being able to clear her lungs has been maybe the single biggest improvement we have made.  We didn’t see the inside of the hospital again until the end of February 2010. 

The visit in February of 2010 seemed simple but rapidly became complicated.  It was initially a UTI then an upper respiratory thing, then Marty had a major seizure that was so violent she broke her right arm as she lay in bed.  Marty was in the hospital for almost three weeks that time and we came home physically and emotionally wounded, her strong right arm was no longer strong and we had to decide how to proceed with recovery.

We got through it, made some changes, started treating osteoporosis, and stayed out of the hospital until November of 2012 and that wasn’t your basic infection admission, she got a stomach virus and was severely dehydrated.  We didn’t have to stay long.  We had been hospital free from March of 2010 until November of 2012, a long respite.

In 2013 we had a bad run of urinary tract infections.  UTI’s make you really sick and frankly they are hard to diagnose for Marty.  We went to the hospital in February and went back again in June.  She was really sick in June, really sick.

We watched the 2014 Super Bowl in the hospital with another UTI.  After recovery we took a different approach.  Great and Wise started Marty on a prophylactic antibiotic and we got a home health nurse to come out on a regular basis to get a clean urine sample to test.  Marty has had some UTI’s since then but we have caught them before she got really sick or septic.  Yeah us.

We have not darkened the doors of Providence for over a year.  We haven’t even been to see Great and Wise that many times.  The unpleasant task of deep suctioning, the daily antibiotics and the home health nurse have moved us to another part of our journey.  We are maintaining.

That doesn’t mean I don’t worry or fret or occasionally make a trip to see Great and Wise unannounced.  We have been to the ER for a diagnosis but we haven’t been admitted.  

Frankly, we haven’t been admitted because I worry and fret and because Marty is a good patient and accepts we are going to do some unpleasant stuff to keep her well.  It’s working.

All of this is to say, I kept records, as you can see, not particularly meticulous records, but records none the less.  It’s a poor excuse for a diary but it does show where we have been and more importantly how far we have come.

We still have miles to go.

Thursday, April 16, 2015

Ten Years Later

It was Sunday.  I was sitting in the ICU/day surgery waiting room at Parkland Hospital in Dallas with son Matt.  The waiting room was deserted and we were waiting for the rigidly enforced visiting hour to see Marty.  It was seven days since her surgery for the ruptured aneurysm, it was seven days she had been lying in a coma in the ICU.

The 2005 Masters Golf tournament was on the small television in the empty waiting room and Matt and I watched as Tiger Woods struggled to keep his lead and win his 4th green jacket.  To golf people it was a huge weekend, one of only four major tournaments, to me, probably to Matt, it was a way to tamp down some of the anxiety and fear that had become omnipresent since Marty’s brain hemorrhage.

I don’t remember who Tiger was paired with that day, I know they eventually went into a playoff and Woods won.  What I do remember is Tiger sinking an amazing chip shot from off the green on the 16th hole.  He aimed at least 20 feet to the right of the hole, hit the ball and the ball curved around to the hole and almost came to a stop, just short of the hole and then rolled in and hit the bottom of the cup.

In the quiet of the that empty waiting room Matt and I both jumped up, clapped and for one brief instance left Parkland Hospital, left the weight of why we were there, left the anxiety of what was going to happen to Marty next and reveled with a younger red-shirted Tiger Woods as he fist pumped after a miraculous shot.  

The excitement on TV was almost palpable and it was the first time in a week I had felt something other than acute sadness, fear or anxiety.  The excitement quickly abated and amazingly I felt a twinge of guilt for feeling those few seconds of happiness.

It’s just plain weird to feel guilt because you feel something good, something other than fear or sorrow, but that’s the way it was for those first few days, weeks and even months.  If it felt good to be with our kids or my family, I felt guilty for feeling good, if someone said something funny and I laughed and for a second and forgot about where Marty was, I felt guilty.  

Simply put, if I wasn’t miserable, if I wasn’t grieving, if I didn’t try to feel Marty’s pain, if I felt happy for a moment, I felt guilty.  Dumb, huh?

That has changed over the last years as we moved from the hemorrhagic stroke to the ischemic stroke, as we moved from one rehab facility to another, as we found care givers and doctors and nurses who made our life better, as I matured in the care giving process. 

I have grown and while I still feel a tiny twinge of guilt when I am off enjoying parts of life that are cut off to Marty I know Marty wants me to feel and be happy.  And besides, we have found a way to be happy together with each other with other.  We have found the rhythm of our new normal.

Ten years later to the day when Matt and I reveled in Tiger Wood’s golf Marty sat in her wheelchair beside me as rain fell intermittently against the windows at our house on Richland Chambers.  We sat side-by-side, her in her wheel chair, me in my recliner and we watched the Masters Golf Tournament, together. 

I suspect Marty was not invested in this golf tournament; I mean really, its golf on TV. Tiger didn’t pull off a miraculous shot to stay competitive and there were no singular moments of thrill aside from a 21 year old from Dallas winning his first major.  

This time, ten years later, Marty and I sat together, not in a sterile uncomfortable hospital environment, not worrying about the next life changing medical crises, but sitting with each other enjoying a moment together.  

It was a moment that reminded me of seconds of arm raised exhilaration and then the inevitable fall back to the weeks of unmitigated fear and anxiety.

Human beings adapt amazingly well.