The Only Constant is Change (8 Month Update)

March 2, 2011 by  
Filed under Our Recovery Journal

As we reflect on the 8 months of recovery since Jessica’s initial trauma, the only constant has been change.  She has been through 5 different hospital/rehab placements, homecare, and finally outpatient therapy.  She has been cared for by a myriad of different doctors, nurses, and therapists in just about every possible health care setting.  People have come into and out of her life constantly as she continues to make progress and get better.  Although change is something that causes more anxiety for a recovering patient than it does for a regular person, Jessica has taken each change in stride and has tried her best to get used to her “new” caretakers.

For a patient recovering from a brain injury, breaking from familiar routines can result in big setbacks.  Changing from placement to placement comes with the terror of transport and the uncertainty of new accommodations and medical staff.  When the brain has been damaged, it is more difficult to see the big picture.  Patients often live strictly in the present, fearing change like a caterpillar fears being poked by a child.  Change can cause the patient to curl up into a ball and resist the new setting and expectations.

Although each new placement came with the fear of uncertain future, Jessica was able to quickly adjust to meet the additional expectations.  Each new setting served as a springboard that propelled her to make new functional gains.  The encouragement of family, friends, and therapy staff helped her focus on meeting these new expectations.  A busy life tired her out and coerced her to sleep.  Patients with time on their hands may descend into worry.  Jessica’s days were too full to allow her mind to wander.  The void between therapy sessions, mealtimes, and physical check-ups was filled with visitors and activity.

 

Outgrowing Homebound Status

Jess and I have always done our best to be prompt whenever we make plans.  It annoys us to be even one minute late when meeting people or arriving at an appointment.  Although she continues to improve and is walking better every month, we often have to allow 20 extra minutes to get somewhere.  If there are kids involved in the trip, it may take an extra 30 minutes or more to get everyone ready and get going.

There is little spontaneous activity in our life.  Schedules must be set and family made aware of the expectations of the day.  There are no last minute shopping trips or restaurant excursions.  Even planned outings rarely go according to the itinerary.  As caretaker for Jessica and parent to three young kids, it takes 10 or more trips down to the garage to load up the car.  It takes a miracle to get us to our destination on time.

 

More Changes: Outpatient Therapy

Once a patient is well enough to get into the car and ride to a therapy center, it is time to end homecare.  Most experts agree that outpatient therapy is the next step in the process.  Getting out of the house, observing others with similar conditions, and having gym equipment available are all reasons to transfer from homecare to outpatient therapy.

Though it takes a lot of effort and preparation to get from the house to the car and into the building, Jessica needs the increased workload in order to keep progressing.  Her personal regimen consists spending three mornings (or afternoons) working out each week.  Her therapy sessions are “stacked” together and include speech, occupational, and physical therapy.  In addition, she works out with me or one of her friends at home several times each week.

If you thought about your own life in the context of doing “therapy”, you would probably do some “therapy” in most of the waking hours of your day.  Jessica’s therapy includes walking, stretching, leg exercises, dishes, manipulating items while sitting or standing, and doing speech activities such as flashcards or reading simple words.

Up to this point her therapy was generally “forced” and she really didn’t initiate much on her own.  While forced activity may be helpful, it really isn’t great for a marriage or family to have to be told what to do all day.  I have yet to meet a woman who enjoys following the directives of her husband.

More recently, Jessica has begun initiating more activity on her own.  She will now get herself down to the floor to play with the baby, sit and fold clothes, look at words and pictures (thank goodness she took so many), and even stretch herself or manipulate one of the therapy activities that we have at the home.

 

Motivate Like a Ninja

I’ve learned to be more of a “ninja” rather than a manager of Jess’ activity.  It’s a lot more fun and a lot less of an argument to leave her at the table with a hungry baby and a jar of baby food than it is to ask/tell her to help out.  The therapy activities we have in the house and baskets of unfolded clothes now frequently find themselves within her reach.  The girls often approach mom after top secret meetings with dad.  They enter the room with purpose and ask her to read books and analyze pictures each day.

Brain injury victims often have difficulty initiating conversations and activity.  Jessica might not be as decisive or confident as she once was, but she continues to work hard on improving herself in these areas.  One characteristic that requires a lot of work is that of being observant.  A visual field cut means that she only has half of her natural vision.  She can see the visual field to the left, but cannot see anything to the right.  Compensating means learning to scan left to right quickly and continuously.  Developing the ability to scan her surroundings is proving to be a difficult skill to develop.  Transforming an unnatural feeling into a habit requires lots of practice and extreme concentration.  Although she might not recover to the point of being the life of the party, Jess has begun that journey by taking her first steps toward a better understanding of her surroundings.

 

New Faces, New Places, Same Goal

Jessica is sad that she won’t be able to drive again or have her memory return to perfection.  She understands that life is infinitely more difficult in the “after” than it was in the “before.”  It is frustrating for her to work so hard to complete tasks that her young children can do automatically.  It is tough to have to rely on others just to get through the day.  Despite these realizations, she is still determined to do the best she can on the activities that she can control.  It was a big change for her to say goodbye to her homecare therapists and start anew with brand new people in a brand new location.  Change is especially tough for someone recovering from a serious injury, but Jessica has taken it all in stride and is doing her best to move forward.  She feels like she has a lot to live for, and that feeling is enough for her as she continues her journey.

 

 

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