Everyday Life When You Are Married to Someone With a TBI

Everyday life is busy, just like everyone else but not like everyone else.  It involves lots of phone calls, visits, and emails to therapists, doctors, nurses, and other practitioners.  We never know what a day will bring forth. This year, David has been under the care of probably 20-30 different people, or possibly more.

Lately, we made changes to our caregiving schedule to consolidate cares and free up some time for family, just us time.  We haven't really hardly had any "us" time in a LONG time.  It puts a strain on things, because we can never talk about private family matters even at our own dinner table.  It's come with it's own challenges, as it always does, but I like it.  Instead of having caregivers 15 hours a day, they are here 9 hours.

I feel like a fire fighter or maybe, a babysitter/ manager would be a better description.  I'm constantly having to follow up on new things we're starting such as orders, appointments, new schedules... Nothing is cut and dried.  It's always refreshing when I get someone on the phone that follows through right away or does their job right the first time.  For example, I had to call and/or email the scheduler for our caregivers FIVE times regarding one caregiver's schedule with David.  We've been in the process of getting David a new wheelchair for FOUR months.  Meanwhile, David's physical medicine doctor had to have an emergency procedure and is out of his office for an indefinite amount of time causing David's botox injections to be delayed two months.  I could write a book just on the reasons that caregivers come up with to either not show up at all, be late, or be unable to fill the position after training.  It's unbelievable, really.

In other ways, our life is normal.  We go to church, we eat meals together, we scramble after a very active, smart 19-month old, we go out to eat, we go on walks (weather permitting), we get together with friends, we celebrate holidays with family...and we are very thankful for these things.

Things to pray for and praise for:  David is still having almost constant moderate to severe headaches despite numerous drug interventions, massage, positioning and other interventions and a clear CT scan,  David's walking, bed mobility, interaction with people and environment continues to slowly improve.