Reflections…

In all this time I had gotten so used to talking.  I would talk to my husband’s doctors.  I would talk to the nurses.  I would talk to friends and family members.  I would talk to the officers who worked with my husband.  Everyone wanted to know how he was doing. There were all kinds of decisions to be made and I would talk to all those people too. There were all kinds of things to remember.  I was in charge, not only of the household, but someone’s life.  All the care my husband needed depended on the decisions that I made then and still do now.   However, when I would leave the hospital and go home, it was usually late at night and very quiet.  I would almost be on auto pilot.  But it was the best time in the world.  It still is today.  For an hour or so before I would fall asleep, I would have a moment to catch my breath.  No one to talk to, no one to bathe, feed, get dressed, undressed or deal with.  No decisions to be made.  Just me and peace and quiet.  Shed the clothes, hop into bed and just take a moment to reflect.  Sometimes I’d imagine it was all a dream and someone would pinch me and I would wake up.  Sometimes I would just let my mind go blank and stare off into space.  Other times I would think about how I would ever be able to bring my husband home.  Sometimes I would just cry and get it out of my system.  I hatched many an idea during this period of time.  No one to bother me, no interruptions, just a single moment in time.  Sweet!   And then I would just fall asleep, a deep, dreamless sleep from pure exhaustion.  Lo and behold, the next day would be here and the entire cycle would begin again.

Ring the Bell and Win a Prize!

If you have ever been to a carnival, you've heard it before.  Ring the bell and win a prize.  In my husband’s case, the prize was a golden ticket which would take him home.  Ah, but not so fast.  He had to work and work hard. 

He was making progress with his speech therapist.  But now it was time to advance to work even harder with the physical therapist.  The time had come for the cast to come off his leg.  The doctors came in and sawed that thing off.  Low and behold, his leg looked awful and at the back of his ankle he had a huge decubitus ulcer.  His leg was approximately two inches shorter and they also discovered he had heterotrophic ossifications in his right hip.  (Which is bone growing inside of muscle.)  Not exactly the bell ringing we had anticipated.  Not at all what the doctors had anticipated either.  Physical therapy just took 2 steps backwards.

When someone had been through such a huge trauma as my husband, they always tell you, don’t get upset if he suddenly stops making progress, because that is how it works; 3 steps forward, 2 steps back. Wound specialist had to step in and take care of the ulcer.  (He would actually continue seeing them even after he was discharged from the hospital.  This type of ulcer takes forever to finally heal.  At one point, the doctors were even talking about skin grafting, but we never had to go that route.)  Ring the bell and win a prize had now become a high stake target and if anyone wanted to reach it, it was my husband. 

His foot was fitted with a soft boot that he would continue to wear even months after discharge.  The first target was to try and teach him to transfer.  The therapists would work with him to transfer from the bed to his wheel chair, from his chair to the exercise matt, back to his chair and then back to bed.  This was a winning moment.  Because now, he wanted me to learn how to help transfer him, then he would not have to wait for the nurses to help him when he had to use the bathroom.  His thinking capacity was truly returning.  And so I learned.  We practiced with the physical therapist until I was proficient.  The moment of graduation came when I had to perform for the therapist and nurse.  My name then went on the wall and then into the charts as a capable person to help transfer my husband.  The nurses’ job just got easier and this was the moment that they decided that I was an asset to have around. I had finally won them over! Now when I arrived early in the morning, I could get him up, dressed, out of bed and into his wheel chair.  With my assistance he could wheel into the bathroom, brush his teeth, shave and get ready for the day without waiting for someone to help him.  My husband became a happy man for the first time in months!  We were on the upswing again, 3 steps forward.  Ring the bell and win a prize was looking better and better. The golden ticket was lurking on the horizon!

The Speech Therapist

After about 2 weeks, the rehab unit started to settle in around my husband.  He was now in a private room.  He still did not understand what had happened to him, but he was alert.  His leg was still casted so the amount of physical therapy was limited until it was removed.  He also had restrictions on how far he could be sitting up because of the healing hip and femur. He was breathing better, but required periodic treatments to help keep his airways cleared.  His heart was doing great after the thoracic aorta was repaired.  His ribs were healing.  He still had some problems with blood clots, but that was clearing up.  His arm was not too good.  They discovered that he had a subluxation in his shoulder because of the spasticity, but they put his arm in a sling and taped his shoulder and back. So far so good!  However, his therapist discovered that he was seeing double vision.  So his eyes had to be patched.  He took on the look of a pirate.  So much so, that my brother in law brought in a fake parrot that we attached to his chair.  The unit got a kick out that!  Like I said before, they were learning to enjoy us!  So during this period of time, much of the therapist work was limited, except for the speech therapist.  She really won over my husband.

When my husband worked with her, it was one of the only places I did not tag along to.  Her office was very small and he really needed to focus on her.  He had lots of trouble with aphasia and memory.  Where the psychologist was constantly testing his memory, the speech therapist was working on restoring his own memories.  She worked on helping him remember me, his family, his home and his life.  His memory book was an asset.   He had developed a language all his own at this time.  It was OK because I understood him, although sometimes we had some great difficulties.  She helped him regain his eating abilities.  The food offered at times was so unappetizing, so she would bring him fresh fruit, especially strawberries!  If she gave it to him, it was OK and the nurses on the unit wouldn’t get upset.  However, we did get into a little trouble once.  The speech therapist told us that we could bring him a Wendy’s Frosty.  It was the right consistency and he loved it.  So whoever was passing Wendy’s would bring a Frosty.  However, Nurse Ratchet caught us.  Oh did we receive the third degree.  But the trusty speech therapist came to the rescue!  She just had to put it in the chart and we were good!  His language was really starting to improve.  It was great that she was able to spend so much time with him at this point, because once physical and occupational therapy picked up, her time would be cut down.  So she and my husband developed a wonderful rapport.  He still remembers her fondly.  However, even when he eventually left the hospital and started out-patient rehab, the speech therapist always continued to be his favorite!

The Day the Music Died

All my life I have loved music, all kinds of music, whether it was classical, jazz, blue grass, rock, country or folk.  When I was a young girl, it was ballet.  I loved the music of the ballet.  That changed rapidly with the invasion of the Beatles.  My husband seemed to share this penchant with me.  We moved on up through the 60’s, 70’s, 80’s, with each decade introducing a wide new scope of music.  Of course we saved all our albums, which now are referred to as vinyl.  We lived through 8 tracks, tapes, CD’s and now iPods (although I haven’t quite figured those out yet).

I played the piano.  My husband played the bagpipes and we introduced our children to the wide scope of music out there.  Each one can play a variety of instruments, from the piano, guitar, violin, mandolin, banjo, drums and of course the didgeridoo.  (We actually have one and that is a whole other story.) 

My husband and I were teenagers during the 70’s.  We did the concerts, from Rare Earth, Led Zeppelin, Peter Frampton, Yes (my all-time favorite), Chicago and the list goes on and on. 

The 80’s brought us the music video.  I remember after my children were born and having to get up with them in the middle of the night, I would turn on the TV and the only thing on in the middle of the night was music videos!

The 90’s rolled around and my husband discovered his Irish heritage and learned to play the bagpipes.  He joined a police pipe band and became proficient in this particular craft.  As a matter of fact he became better than that, he became great!  He even started teaching the bagpipes in another smaller band. 

All this seem to die with my husband’s accident.  Within the first days when my husband was fighting for his life, I couldn’t stand to hear music.  When it has played such an integral part in your life for so many years, each song brought back a memory.  At this point in time, I could handle everything that was going on at the hospital, make all the necessary decisions needed, but I could not handle hearing music.  I suddenly found myself developing a taste for talk radio and the news instead. 

It’s been five years now, I still like music.  I can listen to it again, although it’s not the same.  I still play the piano, although my son plays it better!  My children still play all their instruments, but my husband can no longer play the bagpipes.  This is the decade of talk, in more ways than one.  It’s relearning the value of words and communication, written and spoken, repetition and practice.  This has become my husband’s new goal to become proficient in.  Speech, his favorite subject!

Memories…..

Since my husband had come so close to death, I asked him once if he remembers anything from the time he was unconscious.  Near death experience, white lights?  He doesn’t.  So I asked him what was his earliest memory of his stay in the hospital.  He really doesn’t remember much from nearly 3 months in the hospital except perhaps the last 2 weeks of his stay.  But he does recall one time when he woke up not being able to think in a language.  He said that all he knew was what was in front of him.  His mind was thinking in pictures. 

Way back when, while he was still on the respiratory unit, just before he was moved to the rehab unit, he did say Hi Maryann!  At the time I knew that he did not really know who I was.  It was just what the therapist was practicing with him.

One day I was running later than normal in the morning.  I called my brother in law to see if he was going to stop by the hospital right after work.  He was!  So I scrambled out the door and drove to the hospital.  (Although I made sure that I stopped for the coffee!)  As I came down the hall I could hear laughing coming from his room.  As I came in, my brother in law said that my husband had just said the funniest thing.  He asked my brother in law where the cute blond was who always came to his room.  He thought she was hot!  Too bad he’d only known her for 19 days!  We had been married for nearly 28 years at the time.  It became part of our routine.  Everyday someone would ask him how long he’s known me for and by golly he would add 1 day to the number of days that he thought he knew me for.  We still laugh about it now!

Rose-colored glasses

As my husband settled into his new home, so did I.  Only this time there was no waiting room.  I had to come up on the elevator and walk directly by the nursing unit (actually kind of slithered by at first) and go directly to his room.  At first it was down the hall and he shared it with a roommate.  But eventually because of the condition he was in, they moved him to a private room.  To my chagrin, it was directly in front of the nurses’ station.  It was great for him, because they wanted to keep an eye on him, not so great for me because they were less than happy to see me from sunrise to midnight.   But it turned out alright as I proved to be much more useful to them than they expected.

As his schedule was being ironed out by the therapists, he also had a psychologist come to visit with him.  She wanted to run some tests on him to see how much he remembered.  It had finally come to the time that he needed to know that he was in a hospital and why.  She brought in some pictures to help him figure all this out.  As she showed them to him, she would ask him to point to the one that showed where his was and why.  He had no idea.   Our daily routine was born.

Anyone who came into his room had to say his name, their name, the day, date, time and that he was in the hospital because he was in an accident.  I had to bring him a watch and make sure a newspaper or something that showed the day and date was in his room. 

This doctor also would test his memory constantly.  She would bring in a barrage of memory type games.  I would watch in awe and hope that no one would try and test me because I knew I would fail horribly.  She would have him count and add numbers from 0 to 100.  Then she would ask him to start at 100 and subtract 7 and keep going.  He was great with numbers but not with faces.  At this point his long term and short term memory was pretty poor. 

Of course I would always be there.  He was much more comfortable and at ease if I stayed.  I knew not to talk when she was testing my husband and generally sat quietly in the corner.  She wanted him to answer if he could.  If he could not, she would look to me.  If she did not understand him, I would translate.  Occasionally she would ask me how I was doing.  I was somewhat familiar with her as she had visited my husband a few times while he was still on the respiratory unit.  I would always answer that I was fine.  After all this was not about me, it was about my husband. One day she asked me if I always saw everything through rose colored glasses.  Was she being sarcastic, I wasn’t sure.  As of this day, I’m still not sure.  But if she meant that I was cheerful, positive and optimistic, you betcha!   I knew that his final outcome may not end up a good one, but I was not going to bring that attitude with me through his door.  Through this whole ordeal, my husband was always as cooperative as he could be.  He worked very hard to regain some semblance of his life back and I was not going to be the one to burst that bubble.  So if it took rose colored glasses, then so be it.

The Rehab Unit

My husband’s move to the rehab unit was not an easy one.  Now being alert brings an abundance of other difficulties.  For most people you start to become aware of your surroundings.  For my husband, he didn’t have a clue of what or where his surroundings were.  He could now feel all the pain of his injuries, he still was unable to eat much, he had memory loss, aphasia, his right arm did not function and he had spasticity.  Probably the most difficult part for his was trying to figure out where he was and what had happened to him.  Combine all of this with the move to a new unit and new staff and you get a disaster in the making. 

The nursing unit was not at all prepared to get a patient who had a permanent shadow (me).  I wasn’t about to leave him alone.  I felt that a constant familiar face was a good thing to have around someone who was so disoriented.  He was going to have a great struggle putting together the pieces of what had happened to him and I meant to be there to help him and no one was going to dissuade me from doing so.  At first I butted heads with many of the nursing staff, but eventually we became one big happy family.

On his first day on this unit, he began working.  Poor guy was so confused, but the speech therapist’s goal was to get him up into a chair and bring him down to the dining room to try and practice eating.  It did not go well.  Food was about the last thing he wanted to have.  Of course prior to all of this, he had to have a swallow test to see if he could eat food.  He passed!  (My husband was always a good test taker!)  However, to ease the start of trying to digest food, all of it was mush and liquids were thickened.  If I was dragged through the desert and starved for days, I don’t think I could have handled it.  It was so unappetizing!   Think of water with the consistency of a thick paste, yum.  He would look at it, look at me and push it away.  So much for the start of therapy.

Next he moved on to physical therapy.  They had the honor of being referred to as physical terrorists.  This was another part of the day that he was not fond of.  I thought it was the best.  This was going to help him walk again.  They would exercise his legs, try to get him to stand and then show me exercises to do with him when he went back to his room.  He could hardly keep his eyes open during this part nor could he accomplish any of the tasks that were thrown his way.

Occupational therapy came next and they wanted to try to get his arm to move and best of all, reacquaint him with the bathroom.  Such enthusiasm on their part, not much on my husband’s part.  All of this in one day, his first day!  By the time this day was over, he was pooped.  And it was closing in on dinner.  It was time again for the luscious array of mushy food.  He did not make it.  Sleep set in.  He would have to start all over again tomorrow.  His job was going to be to relearn everything that we all take for granted.  My job was to learn how to help him succeed.  And so both our challenges were being stacked up with the odds at this time, not too good.  I suddenly felt like Scarlet O’Hara in Gone With the Wind…Tomorrow is another day!