Monday, May 23, 2011

The Shortest Longest Trip of My Life

found via google images
The call to go to Idaho came sooner than we'd expected.  The insurance was starting to push back on how much inpatient rehab they were willing to pay for, and we wouldn't know until the day before my dad would need to leave if the insurance would cover another week.  It wasn't feasible for us to take that chance and leave on a moment's notice, so a week ahead of when therapists had hoped he would leave, my dad was discharged.  The decision to come ahead of schedule was extremely difficult, especially knowing how beneficial the additional intensive therapy could be, but it was another situation faced by millions of Americans with our hands being tied by insurance.

Our trip to pick him up was a whirlwind.  The muffin was about  6 weeks old and luckily a great traveler.  After the 5 1/2 hour drive, we headed straight to the rehab hospital.  Overwhelming doesn't even begin to describe how it was to see my dad for the first time post-stroke.  He seemed so young but so old at the same time.  He was throwing a ball around and seemed playful, telling jokes that one might hear in the halls of a junior high.  We realized that mentally, we would be caring for a teenager.  Physically, he could've easily been 80.  His movements were so labored and deliberate, and sometimes just out of his control.  I'm pretty sure I cried after we returned to the car.  It was so much to take in.   

The next morning we returned to the rehab hospital, ready for an intense day of training.  We met with therapist after therapist and nurse after nurse.  Sessions with each specialist were timed with breaks in between so I could feed the baby.  It seemed so surreal.  I took pages of notes.  The physical therapist was so proud as we walked the length of the gym several times, the husband and I taking turns spotting so we knew what we would need to do after we returned home.  We practiced stairs, and I was a nervous wreck.  We ventured outside to practice curb transfers and car transfers and I played a continual loop in my head of what would happen if he fell.  I'm 5'0 and my dad is 6'3.  There was no way I would be able to get him up or offer him much assistance in the event of a fall.  And yet, here I was, learning how to steady his steps with the expectation that I could help.  I remember feeling slightly confused at the joy the therapist had.  To me it felt like my dad still needed a lot of help, and I think I was too nervous about helping him to focus on the progress he'd made.  

We met with the occupational therapist and learned how to do stretches for my dad's arm to help him regain mobility and prevent atrophy.  We watched him play games stacking cups and reaching across the table, trying to teach his arm and hand the things it used to be able to do.  We discussed the mechanics of showering and eating and getting dressed and other activities of daily living.  This session also brought increasing realization of the help we would need to provide my dad.

We met with a nurse who brought in dinner rolls and needles so I could learn how to give shots and administer insulin.  During this session I also learned wound care for multiple wounds on my dad's feet.  His diabetes has led to neuropathy in his feet meaning his feet have no feeling and are also very slow-healing, so the slightest scratches become wounds that need great care to prevent infection. Her thoroughness in explaining his medications and dosages and routines was reassuring. Unlike the uncertainty I felt with getting my dad safely from point A to point B, I knew I had the abilities to keep track of his prescriptions and rely on the routines of scheduled dosing times to provide some structure amidst the chaos.

At lunch time, my dad went to the dining room to eat with other patients, and the husband and I had a few minutes alone with our baby.  We found the hospital cafeteria, ate bad sandwiches, and tried to process all that we'd be learning.  Our lunch was full of conversation regarding the mechanics of our situation- how would this really work?  How would these new responsibilities become part of our everyday lives?  And what questions did we have as we tried to drink from the fire hose, because this was our opportunity to get them answered?

The afternoon brought more meetings.  Carb counting with the nutritionist, logic puzzles with the speech therapist, and a pep talk with the social worker about how to handle it all after she helped us with some disability paper work.  We packed up some of his belongings and then left to get some sleep before the drive home the next morning.  We made a quick trip to Wal-Mart that night to fill his prescriptions, an errand that couldn't wait for us to return to Utah.  $500 later we left with more of a realization of the financial sacrifice we'd be making, hopeful that we would recoup his medical costs later if he was able to get approved for disability.

The next day we loaded up our car and our baby.  We drove to the rehab hospital, putting the last few belongings needed immediately into boxes and then packing our car really full.  We pulled the car around to the curb and were escorted down with the physical therapist for our first real car transfer.  And then we pulled away.

My dad sat up front with the husband.  I sat in the back next to the baby, pumping and meeting his needs throughout the drive back to Utah.  The husband tried to talk to my dad the entire drive, getting to know the life story of what seemed like a stranger who would be living with us now.  It was hard for my dad to talk.  It was hard for us to understand.

We stopped for lunch at Subway.  I was nervous when he got out of the car. I was nervous when he stepped onto the curb.  I was nervous when he opened the door.  I was nervous when he chose what to order.  I figured Subway was our healthiest bet, but I wasn't planning on him asking for chips.  After lunch we resumed the drive as we read through literature on diabetes and strokes and carb counting.  We talked about foods he liked and didn't like so I could try to plan meals accordingly.  I can still see the sun streaming through the car window and the pictures of foods on the purple-bordered pages.

Things felt awkward and strange.  We made it home around dinner time.  Things begin to blur around this time- I know someone brought dinner, but can't remember if it was my mother-in-law or my sister-in-law.  I remember freaking out internally while my dad was trying to make it in the house.  Navigating the 4 stairs from the garage was one of my biggest concerns.  I remember following him everywhere he went, worrying about his every move, straining to understand his every word.  We helped him get dressed for bed. We did stretches with him.

And then we went to bed and everything was completely different.  Our house felt different.  We cried and prayed.  It had been a long road from Idaho to Utah.  The shortest, longest trip of my life.  And we knew the longer road, the journey, was still ahead.

In an effort to remember what I've been through taking care of my dad post-stroke and share the growth and beauty that came along the way, I will be journaling this experience as part of Bee a Little Better.  You can find all posts in this series under the label "the dad story".  I hope you'll stick with me as I record this experience.  If it doesn't interest you, come back tomorrow for something different.

1 comment:

Hannah said...

Christina, you are a saint. Really, you are. I don't know how you made it through all of this, but I am sure you have grown a ton. Loved reading this. Love your blog.