Marriage and Traumatic Brain Injury: Who is the Caregiver Here?

Brain Injury Blog 

Marriage and Traumatic Brain Injury: Who is the Caregiver Here?

by Ginger Bristow Gaitor

I guess for Bill and I, the first thing we had to get over when he was injured was the Traumatic part of the equation. I am sure we have all had trauma in our life, so you know that it keeps coming back from time to time.  PTSD, is a real problem and many of us suffer from it, both from TBI and our previous life experiences.

If you have ever tried to get a veteran of the Vietnam war, Korea, World War II and now the Iraq and Afghanistan to talk with you about their experience, you might feel a little shut out.  That is because they are unable to communicate those with you, and don’t want to do what feels like reliving it.

Eventually, we all move on from the trauma, revisiting it less and less. That is true for Bill and I.  The initial injury has given way to daily life, and adjusting to Bill’s slower processing abilities, the continued short term memory, the fear that the seizure disorder will thow him into another episode of status epilepticus, or always on the watch to prevent SUDEP (Sudden Unexplained Death in Epilepsy).

Status epilepticus (SE) is a common, life-threatening neurological disorder. It is essentially an acute, prolonged epileptic crisis. Bill’s have lasted from 6-9 hours, and because it starts almost invisibly, he cannot be left alone for very long.  Changing medications can trigger an episode at times, but with the brain injury, anything can trigger his seizures.

These episodes can throw the caregiver, me in this case, back into the original trauma. While Bill is in the hospital being treated, I sit with him and try to keep myself from reliving the past 6 years of hospital visits.  Now I bring a book, relax, take a walk, make sure I eat.  In the beginning I use to hover over the bed rail, making sure he was still breathing.  Now I give him space to rest, and give myself time to recover from the new trauma or rushing to the ER for another possible long term stay.

The past few visits, I have not been sure Bill would return home. Maybe this time he will not recover enough to stay at home and have to move to a home. That and my own hospital stays this year have helped me have a new outlook on these times.  It is healing time, in more ways than one. It is a time to let the doctors and nurses do what they know how to do.  To let someone else carry the load and take care of myself.  Sounds easier than it is. It takes a lot of self-talk, and self-control. That gets easier with time as well.

We value the time we share together at home, and more and more venture out into the world as a normal couple.  One thing I want to say about Bill’s brain. It is definitely injured.  But his brain is sharper and wittier than it has ever been.  He is a kind, intelligent and caring man, husband, brother, father and grandfather.  We are lucky he is still in the world to share that with us.

Two nights ago, around midnight, I had to get up from bed to turn off the dehumidifier.  I could not move for the life of me.  I had to wake Bill and ask  him for help. He quietly walked over to my side of the be, helped me move my locked spine toward the edge of the bed and we hung on to each other until he walked me back to bed.  The walker would not have helped me this time. I needed his strong arm around me. I realized how very luck I am to have him as my caregiver.

For more information of SUDEP, the Epilepsy Foundation has an informative article on this subject.  linked below.  Bill technically has a seizure disorder and not epilepsy, but he is on multiple anti-seizure medications.

http://www.epilepsy.com/EPILEPSY/sudep_epilepsy

 

November  9, 2011

2 responses to “Marriage and Traumatic Brain Injury: Who is the Caregiver Here?”

  1. Ginger says:

    Thanks Janet. We are making the daily mutual caregiving work for us as the holiday season is in full bloom.

  2. Janet Cromer says:

    Hi Ginger,
    I am so impressed and heartened by the way you and Bill have made sure to sustain some mutuality in your marriage. What a team! I bet Bill feels proud when he can help you. You are so wise to snatch those few precious minutes to care for yourself when Bill is hospitalized.

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