Book Summary

Book Summary ** Our lives, after the diagnosis and subsequent treatment, of my husband for a brain tumor, clearly have taken a path less traveled. Yet our journey has and continues to be, a journey of hope, joy and of unyeilding commitment. We invite you into our lives, a view of our childhood, marriage, a marriage seperate from convention, yet strongly bound. Join us as we recall the last twenty-five years, twenty of which have been spent LIVING with a brain tumor. Come, witness our challenges and discover our triumphs as we reinvent our relationship, struggle to redefine marriage roles, communication styles, and reclaim intimacy after illness.

Tuesday, January 15, 2013

New caregiving perspective, sharing Hope with Dad

I am long overdue for a post.  Back in October while attending the NBTS summit I was distracted by the recent diagnosis of cancer in my Dad.  At that point I was on the roller coaster of emotions.  The trip to Boston allowed me to see him for a short time and give him a long overdue hug filled with hope.  My hope was that this new cancer would be treatable and that Dad would get some relief from his pain.  I returned to Florida with mix feelings and an overwhelming list of questions.  How can a 83 year old navigate this maze we call health care?  I have been the captain on our own ship for 21 years navigating some stormy seas with Ron.  How can I help Dad now that he clearly needs someone.  My siblings and his friend were doing their best, getting him through tests and doctor appts.  I would provide questions to ask, observations to make over the phone.  Not seeing him and assessing myself was so stressful. After a second report that he had doubled up on his meds did I know I needed to make the long drive to NH.  Knowing his pain was still not under control and that with chemotherapy starting, the regime would get more complicated I knew in my heart where I needed to be.  The details of where we would stay and the logistics of my work from home, well those details did not seem to stop us.  I have to admit I was counting on tons of hope.
Hope prevailed.  We have taken up residence where angels in our midst have shared their homes.  I have not missed a doctor appointment or chemo day for Dad.  Having his med list available and updated for each appointment seems to set his mind at ease.  Observing and assessing any new symptom to report to doctors is such an innate task to me and Dad is ever so grateful.  His gestures, sparkle in his eyes and repeated thank yous fill my heart with such contentment.  I know I am where I need to be.
But I am left wondering what do other folks do when navigating the maze?