Dear Dr.  Betty,

My husband gave up his retirement and I gave up my job to take care of our 26 year old son, his wife and child. Our son, Ben, was injured by repeated IED blasts in Iraq several years ago. Shortly before he was sent to war he married his girlfriend of 6 months. Just before he was hurt, his wife found out she was pregnant. Ben suffers from minor Traumatic Brain Injury (TBI), and Post Traumatic Stress Disorder (PTSD.)  He is recovering slowly but has significant problems with memory, speech, sleep, anger and depression. My husband, Ben’s wife, and I do almost everything for him.  We are his unpaid caregivers. His young wife is overwhelmed with care for their daughter and for him, and now is suffering from depression too.

Our interactions with the Veterans Affairs Department cause us more frustration and stress, due to co-pays for medical care, delays and denials for services or veteran benefit payments.  Some doctors have suggested that our son is malingering and is not really disabled.

My husband and I love our son very much and have sacrificed everything for him.   However, this is all taking a huge toll on us. We need help and hope. I know that you have written about military families in the past. Do you have any suggestions?

Feeling Fatigued and Afraid in Florida

Dear Feeling Fatigued, 

The years of grinding war and prolonged exposure to combat are creating extreme stress and strain on many families. Injured service personnel, who have been wounded in the wars in Iraq and Afghanistan would not have survived in previous wars because we did not have the medical care that we do now.

Get connected

The amount of change and trauma that you and your family are facing would cause most people to feel emotionally and physically tired and fearful. It would be very helpful to get together with others to talk about all of the adaptations and requirements you are facing. Having others who are experiencing similar problems will help you cope better with the distress and reduce your feeling of isolation. The Veterans Department has hired mental health workers who specialize in PTSD and TBI. You, your husband, daughter-in-law, and grandchild will be able to express your helplessness and hopelessness freely with those mental health workers. They can also suggest support groups that include family members who are going through the same traumatic experiences.

Not faking it

Seattle researchers have found that some veterans that have been exposed to blast shock waves from Improvised Explosive Devices (IED) have persistent, long lasting changes in brain function and neurological damage. Now there is proof that these men and women are not faking their injuries, but rather in need of extensive rehabilitation.

Resources are available

There is a wide-range of resources that are available to you so that your situation can be improved. The National Brain Injury Foundation in Washington D.C. has many helpful articles, books and links to the latest resources related to head injury.  They even have a book for your grandchild called: Susan’s Dad: A Child’s Story of Head Injury. Please contact them for more information.

Misunderstood, misdiagnosed injuries

I suffered from a Minor Head Injury 14 years ago, therefore I am familiar with how this wound is often misunderstood and the damage underestimated or even ignored.  I experienced short-term memory loss, mental focus problems, headaches, and sleep disorders. Doctors at Kaiser suggested that I might be malingering or only suffering from PTSD.  I thought I was losing my mind, and just couldn’t think straight.  Luckily I finally found a knowledgeable doctor outside of my insurance plan who prescribed the proper rehabilitation program (also outside of my insurance plan) but I had to battle for payments for the appropriate treatment.

Closed head injury is the most common serious neurological disorder in the United States yet, in the past, care had been poor; advice about treatment was often conflicting.  Even today, many patients are referred only to a psychiatrist, misdiagnosed and the genuine cognitive, emotional and physical symptoms doubted. I believe this is so because it is common for people to deny a problem that they cannot see because there are no visible scars.

Not minor, it’s major

Even though the injury is called minor, it causes major effects that are devastating, dramatic and profound. The brain defines who we are and thus affects every area of our lives when it is damaged even slightly.  One has to be tenacious and sometimes must protest loudly to obtain full rehabilitation services. Sometimes, in order to get immediate and timely treatment, soldiers must obtain cognitive and neurological rehabilitation outside of the army.

Rehab

Multidisciplinary rehabilitation is slow. It takes determination and support to retrain the brain. Sensory motor integration, Eye Movement Desensitization (EMDR), acupuncture, brain gym, therapeutic massage, and other modalities are sometimes helpful in addition to physical, psychological and occupational therapy to overcome PTSD and TBI.

Help is in the works

Our president, Barack Obama, understands the burden of TBI and that it is the signature injury of the Iraq war. He has sought and gained more money to be spent on research, diagnosis and treatment, knowing that it can mean a life-long chronic disability for 5-15% of those injured.

At this time, the V.A. is improving its services to Vets. They have recently hired personnel to help with the backlog of claims. There is a new system of documenting injuries, maintaining and sharing medical records. 

Congress has passed the Caregiver and Veterans Omnibus Act in May of this year. This bill helps the entire family with heath care, counseling and a living stipend. They also provide respite services, so that you can pursue positive, enjoyable experiences occasionally. 

Caregivers…take care of yourself

This is the time to call on family and friends to provide you with support and caring. I suggest that you make a list of things you can do that will revitalize you, or that you find positive, humorous or invigorating. The Family Caregivers Alliance can be of tremendous help to you as well. Communication with others often provides a lifeline.

Your energy is stretched thin, and the retirement you planned for has disappeared for the time being. Please take good care of yourself so that you do not become strained to the point of exhaustion.

Distressing experiences can motivate people to develop new coping skills and to reach out for resources. Now is the time to seek nutritious, loving relationships and groups that will understand your need to vent and problem-solve, to help you maintain your vitality, wellbeing, and to make the best of this bad situation. You will learn so much about yourself and others and become stronger, more skillful. Often, people placed in such trying and extreme circumstances discover a reservoir of strength, elder wisdom and a bank of knowledge previously unknown to themselves…their innate survivor abilities.

Resiliency

As you and your family recover from this major set-back, your perseverance, humor and compassion will give you the strength to be resilient enough to make the changes required of you and your son. 

His participation in his care will be of the utmost importance as he starts over again.  His military training has given him skills and the self-confidence that equipped him to endure, suffer and survive.  Please beware that you don’t do so much for him that he won’t have the opportunity to tap into those skills.

Al Siebert Ph.D. wrote The Survivor Personality. I agree with his thinking on the topic of resilience: “Survivors of emotional hell refine some people into their purest essence.”  I hope that your own unique combination of strengths will help you discover your astounding strength of character and that you and your family will be healed and transformed.

My best to you as you adapt, cope and thrive.

Dr. Betty Frain