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.

Pain from a roadside bomb pierces soldier's life

Pain from a roadside bomb pierces soldier's life
He and his wife endure long recovery at Wright-Pat and Georgia base that takes two years, 40 surgeries.

By Margo Rutledge Kissell

Staff Writer

Sunday, November 25, 2007

For two years Elizabeth Bowen watched her husband, Ryan, endure more than 40 surgeries, frequent nightmares and the devastating effects of Post Traumatic Stress Disorder.

Two years of a recovery that never seemed to follow a straight line.


So when her husband called distraught from a hotel room near Fort Stewart, Ga., she knew what to tell him: Go to the base hospital.

It was Oct. 26 and Ryan already had been in Georgia for six weeks, much of it spent waiting for word from the Army medical board that would determine his level of disability for injuries he received when a roadside bomb exploded under his tank in Baghdad during his second tour.

The 24-year-old Army specialist had just said goodbye to friends heading to Iraq for a third tour. "Some of these guys I've known since the first time," he said.

Back in his hotel room, his mind began racing. He started pacing, hyperventilating. Then he began to cry.

After talking to Elizabeth, he called a friend. The soldier, just days away from leaving the Army, gave him a choice. He could go to the hospital — or go to the bar.

There were countless nights over the past two years when that choice was no choice at all. Alcohol was his great escape.

But this time was different. This time Ryan Bowen chose the hospital.

"I didn't want one of those nights where I broke everything in the hotel or hurt myself," he said.
click post title for the rest

You really need to read the rest especially if your spouse is going through any of these kind of nights. The nights are the worst for them.

In the 23 years we've been married, my husband and I have never slept in the same bed all night together. It was either he was on the couch, or I was. A couple of hours was just about all we could take before the tension made both of us uneasy. He couldn't stand anyone near him at night. This, I discovered on our honeymoon, would be a problem in our marriage unless we found a happy medium. We did. As a result there were many nights when I would hear more than the TV on all night long. I would wake to a loud noise, only to find something else had been broken. A remote control was usually the fatality. I eventually learned to not place any real attachment to things in our house. Jack would always try to go out and replace whatever it was or come close to it,but it was never the same.

Nightmares are just a part of all this. One of my first lessons in waking him up from a nightmare came from a fist clinched and another hand reaching out for my throat. He stopped himself in time and figured out where he was as it dawned on him who I was. (Not the enemy.) We all learn to adjust to things that are just not possible to have in this kind of marriage. Some have it a little better. They get to sleep in the same bed as their spouse. To them I strongly suggest you do not touch them if they are in the middle of a nightmare, because they are not really next to you. They are back there. Get out of bed so that they can't reach you. Go to the foot of the bed and gently call out their name. If that fails, gently touch their foot as you say their name. Do not shout. Black eyes happen too often and there have also been many broken noses.

When their nerves are on edge, so are your's. If you know where all of this is coming from, it's easier to get out of the way of it and not blame yourself. You have absolutely nothing to do with what they are going through but you have everything to do with how well they heal from it. Until they are ready, it is a daily prayer and finding the patience and strength to get through it all. I had to keep reminding myself what he was like in the beginning when PTSD was mild. Keep reassuring yourself that he or she, is still in there beneath the pain.

One other thing is that no matter how much you know, no matter how much knowledge you have on this subject, you will not be perfect in any of this. I still blow up as if I'm dealing with a person who is "normal" even though I know there is absolutely nothing "normal" about a combat veteran. Even the ones who come home seemingly fine without PTSD have their share of issues to overcome. We are a nation of over 300 million people yet we only have about 17 million combat veterans. They are in now way "normal" because war is not part of normal life. You will never understand them totally. After 25 years, I'm still learning things about them and there is still much more I will never know. When you put yourself in their place, you understand that what they are going through is a normal reaction to a series of very abnormal events. We can understand people dealing with PTSD when it is a one shot deal like a tornado or hurricane but we fail to understand when it happens to them day in and day out.


It still amazes me when Jack finally notices something that is obviously different. I've cut my hair a hundred times and drastically changed the style. Usually he notices about a month later when he looks at me and wonders when I did it. I've lost and gained a lot of weight only to lose it again and he never notices. At least he doesn't until I have to go out and buy new clothes.

I'm still not quite sure if it's mostly anger or defense that makes him crash things in the middle of the night. Sometimes it's both. It gets very frustrating for them to not be able to sleep all the way through the night peacefully. Even medications have Jack waking up every night but he is glad he can at least go back to sleep a lot sooner now with them.

If your husband or wife is going through this, it is extremely important that you are able to talk about it with someone who will understand. Holding it in isn't good for you because you begin to think there is something wrong with you. Find groups or a trusted friend to talk about it with. They don't need to give you advice because as much as they care about you, unless they are going through it, their advice is usually wrong. They tend to blame them instead of trying to understand. That's people in general. You're much better off with some with an open mind or experience. As the DOD and the VA ramp up help for them, they should also be setting up support groups and counseling for spouses. We need it as badly as they do.