After the Diagnosis

Flood of Emotions
So how did I feel as I heard the words of the diagnosis coming out of the doctor's mouth?  It's hard for me to articulate exactly what type of feelings and emotions were going through my body and mind.  My husband was in a diagnostic center out of state with a team of doctors.  So as a group, they communicated this devastating news to me over the phone in the form of a conference call.  When they first began explaining the findings of their clinical tests, I couldn't believe what I was hearing.  I was trying to take notes as they spoke to me, and I remember my hand became so weak that I couldn't write on my notebook.  My body became so physically weak that I could no longer hold myself up in my office chair.  I slumped to the floor on my knees, crying uncontrollably but trying to listen to everything the doctor was saying.  I remember the doctor explaining that this condition was most likely due to football brain injuries, and he told me that he explained this to my husband by telling him in essence that he is a "Wounded Warrior" from his glory days of football.

Denial?

At first I wanted to believe that this was incorrect.  He's too young to have something like this happening to him.  How could they mention the term "disabled" in association with my husband?  However, each doctor who evaluated him discussed results of their individual tests which all matched with this diagnosis.  A brain scan and MRI both revealed areas of damage to his frontal lobe.  How could I deny these results when the diagnosis seemed like the missing piece of the puzzle of his long list of symptoms?

Numbness

The next few days are a blur to me.  Sadness, fear, anxiety, worry, doubt, anger, and emotional despair exhausted my energy.  It seemed difficult to place one foot in front of the other.  I was dealing with each day "moment by moment."  Thinking of taking "one day at a time" seemed like too insurmountable of a task  for me to handle. 

Panic & Uncertainty

As the emotional haze began to lift from my brain, I began to panic thinking about the need to prepare for our future, for the future of our sons, and for my husband's best plan of treatment and care.  The doctors told me about the need to apply for disability benefits and to obtain Power of Attorney and Guardianship for my husband. 

Jolted into Action

The shock of my new reality hit me one morning, when I envisioned myself bearing all the responsibilities of my family solely upon my shoulders.  It seemed like I was struck by a lightning bolt which injected me with energy.  I realized that it was up to me to make the best of this situation for the benefit of my family.  My sons were depending upon me as well as my husband.  Our future depends upon my actions today.  I began making lists of people I needed to contact including our financial manager, our insurance agent, our bank, doctors, organizations, social workers, therapists, family and friends.  I knew that I was not going to be able to navigate through this journey alone.  I began a targeted search online for any and every resource I could find that might possibly provide me with guidance and wisdom with my new reality. 

Reorganized Life

I slowly began to realize that life would never go back to our old version of "normal."  I needed to restructure our lives within the framework of a new version of normal.  Priorities changed, schedules changed, things that mattered before seemed minor now in comparison to this monumental task.  I have always been a goal oriented person.  So I began writing down long range goals as well as short term goals which involved our family's future and my husband's care and treatment.  Establishing these goals helps me to focus each day on smaller tasks which can move us in a positive direction.

Acceptance of a New Normal

I'm still defining our new normal, but I'm much stronger now than I was a month and 1/2 ago when we first learned about the diagnosis.  Knowing what his condition is helps me to understand his limitations and behavior.  That was the first step in learning to best chart a course for our future.

The Diagnosis

What does this mean for our family's future?

If your story is similar to mine, the diagnosis of dementia has evolved over time.  For many years my husband has suffered from increasing attention issues, memory issues, self-control issues, anger, aggression, and executive dys-function.  Yet for me, hearing the diagnosis came as a shock. "Dementia?!  My husband's too young to have something like that!"  What I thought had been symptoms related to depression, were in reality much deeper neurological problems caused by a specific type of dementia.  My husband is a former college and pro football player who has been diagnosed with a type of dementia that is caused by chronic head injuries he sustained while playing the sport he loved.

Paradigm Shift

Upon hearing the diagnosis come out of his doctor's mouth, it seemed as though my entire world began rotating upon a different axis.  The things I had always counted upon, will no longer be applicable.  The responsibilities of our family are solely upon my shoulders.  My husband and our three young sons will all be dependent upon me.  What am I supposed to do now?

So Many Questions

I am just beginning in the process of finding the best type of treatment, therapy and care for my husband, and I feel bombarded on every side with new responsibilities.  Applying for disability, grasping for answers about how to best prepare financially for the unknown road ahead, finding the "right" doctors and therapists in our area, battling the insurance company for coverage of his treatment, finding emotional support for our family, finding people to connect with who face similar issues, and simply learning to cope with this diagnosis have all consumed my time, energy and thoughts since mid-December when we learned the truth about his problems.

My Journey
This "diary" will chronicle my journey and provide insights into the things I learn about dealing with this type of patient in my home.  There is no blueprint or road map which has been handed to me thus far.  Here I will discuss family dynamics, treatment, therapies and simply how we handle life with our new brand of normal.  Any insight from readers will be greatly appreciated.  I definitely want to connect with others who have traveled down this same path, and will be most thankful for their advice, support and wisdom.

Right now it feels like a lonely road...