PTSD Common Among Lung Transplant Patient Caregivers

Depression, PTSD Common Among Lung Transplant Patient Caregivers
Sunday, May 18, 2008; 12:00 AM

SUNDAY, May 18 (HealthDay News) -- Caregivers of deceased lung transplant patients are four to five times more likely to suffer symptoms of depression and post-traumatic stress disorder (PTSD) than the average person, researchers report.

The findings, to be presented at the American Thoracic Society's 2008 International Conference in Toronto on May 19, come from assessing caregivers of all University of Washington lung transplant recipients who had died within the past five years.

"The caregivers we studied had rates of depressive symptoms of 21 percent and of PTSD symptoms of 32 percent, compared to the average in the general population of 6 to 7 percent," study author Dr. Cynthia Gries, of the Division of Pulmonary and Critical Care Medicine at the University of Washington School of Medicine, said in a prepared statement. "This suggests that there is a significant burden of psychological symptoms in family members which has previously been unrecognized."

The study also found that family members who perceived that their loved one had either a lower quality of dying and death or poorly controlled pain symptoms were more likely to have symptoms consistent with PTSD.

"Most people don't realize that prior to wait-listing a patient as a lung transplant candidate, a caregiver plan must exist to support the patient through the entire process," Gries said. "That process can be lengthy and grueling for the caregiver as well as the patient, resulting in much higher rates of depression and PTSD symptoms.

Gries said trained counselors who meet with family members could help them cope with emotional and financial issues while reducing the stress put on caregivers.

More information

The U.S. National Institute of Mental Health has more about post-traumatic stress disorder.

SOURCE: American Thoracic Society, news release, May 18, 2008
http://www.washingtonpost.com/wp-dyn/content/article/2008/05/18/AR2008051800867.html

About 10 years into taking care of my husband and fighting for his disability, I needed help coping with the frustration and stress. I had to see a psychologist in Salem so that I could vent. I knew what PTSD was and all that came with it but what I didn't have was someone to talk to who knew what PTSD was. At this point, my family was finally coming to terms with PTSD and no longer suggested that we get divorced, but they still were not informed enough to understand what I was going through.

One of my brothers was working with inner city kids, growing up on welfare and trying to get them interested in going to college. He could understand these kids growing up with violence from gangs and guns, but he could not understand what I was going through or my husband for that matter. This caused a huge rift between us and I did not totally forgive him until his early death. I forgave him at his graveside. He was my brother and while we spoke and I still loved him, I could not get past the attitude he held toward me. He told me that he had a degree in psychology and I knew nothing. He said "You didn't even finish college!" as if this prevented me from learning anything. Not only was I fully invested in researching and studying PTSD, as well as the outreach work, I was living with it on a daily basis. I had to turn to a stranger just to be able to talk about all of it.

I wrote the book soon after to provide support and understanding to families just like mine who were not getting any of it from their own families. We often talk about what the person with PTSD and suffering go through but hardly ever speak of the families dealing with all of it as well. Caregivers are forgotten in the whole process. They need just as much help as the patient does.

I tried to volunteer at the Orlando VA hospital to run a support group for veteran's families. I was told they were no longer funding support groups. It seems as if no one at the VA considers the importance of the family providing the bulk of the care for the veterans. As in the piece above, the caregivers pay a price for their love and willingness to take care of their family member. We can understand what all caregivers go through but no one listens to us. We need just as much support as the patient, but no one bothers with us. After all, we are nothing in all of this in their eyes, but we are everything to the patient.