Caregiver of the Week: Colleen Saffron

My husband SSG Terry Saffron was wounded in Baghdad Iraq on May 5, 2004 in an IED explosion. The explosion killed his two soldiers Bradley Kritzer and James Marshall. They were deployed therewith the 1-21 FA out of Ft Hood (which was then a part of the 1st Cav Division and is now a part of the 41st Fires Brigade). When he was initially injured, they knew it was serious but no one was quite aware how long his recovery would take and to what extent they would have to go.

His right lower mandible (jaw) was shattered completely, his upper right arm had 3 inches of bone shattered, the bicep was utterly shredded and the triceps are cut in 3 areas as well as they eventually had to tack his deltoid muscle to his humerous so he has very limited mobility. Eventually his injuries to his jaw resulted in them actually removing the whole lower right jaw and just putting a metal bar in there. They tried numerous bone graphs and other reconstructive surgeries with no success before they sent us to a very unique specialist who used a process called stereolithography to create a model of his jaw then used his fibula from his left leg (the whole thing knee to ankle!) The surgery actually took 14 hours of surgical time and nearly 19 hours total. It was brutal. Recovery was long and difficult from that one.

When he was injured in 2004 no one was talking about brain injuries or anything of the like so, although we were noticing serious issues of change in him we were told it was fine. Finally, in November of 2008 my husband and I pushed for a brain SPECT scan to be done so we could find out if we were just hypersensitive or if he actually had a TBI. The results of his scan were abnormal and “consistent with TBI”. To many that sounds like a relief to have answers however for us it was also the shocking realization that since most patients with mild TBI have normal brain scans, that he had an abnormal one more than 4 years after the fact meant perhaps there were some things that no one had addressed. Add to these injuries that he is also dealing with PTSD on a moderate level we have the formula for total wife and caregiver burn out.

As the caregiver, I had to stop the freelance interior design work I was doing when my husband was injured, and could not drop the schooling I was in because it would mean my student loans would be due for payment in about 6 weeks but I did not have the money to pay them. I continued my schooling (that I started just before my husband deployed in March of 04) while I sat in waiting rooms and we have 3 children.

In Nov of 06 after months of having trouble with chronic pain and other issues I was also diagnosed with fibromyalgia and Chronic fatigue syndrome myself. These illnesses are believed to be stress induced illnesses and something few people talk about is how many of us as caregivers end up with these types of illnesses.
My husband’s MEB was begun in Dec 2008 and finally, on July 20 of 2010 we had all the paperwork back and the retirement process could begin. After 22 years in the Army, my husband began terminal leave August 20, 2010 and is set to be permanently retired on Oct 20. It has been 6.5 years of care, of learning, of exhaustion and trial. It has also been 6.5 years of opportunity, blessing, chances to give back and a realization that everyone CAN make a difference in life.

I look back and there are some very specific things I would love to people to be able to understand. As a wounded warrior family there was no homecoming for my husband, no parades, not even a welcome. He was flown to an airfield on Ft Hood, shuttled to the hospital and then taken through a back door into a clinical area without us even being able to see him until after triage. There are not ceremonies, recognition or observances for these guys. Our concentration on our returning heroes and our fallen is right, and just however it is a reality that our wounded heroes get shuffled around in a system and treated with the belief that in a couple months all will be “back to normal.”

Average recovery time for a severely wounded soldier is 4 to 7 years. During that time family member caregivers are asked to maintain a level of care we are not legally allowed to require from healthcare professionals. They give up jobs, communities and often end up in severe financial distress due to their new role as a caregiver. Depending on the individuals involved in the process we may get fantastic support from one commander and 4 weeks later find ourselves treated like trash on the sidewalk. Our support system is not consistent; the offices we report to are but the individuals change frequently. As civilians we are required to understand the lingo and system of the military and VA but I don’t know how anyone can truly understand it. I do not fault the military or the people who have helped us they have done all they are able to but the constraints of the rules and bureaucracy often tie their hands too.
I am constantly challenged with the fact that because my husband LOOKS good the system and the world in general tends to not really listen to us when we try to explain the full extent of his injuries. Unlike the injuries that are physically disfiguring my husband’s injuries are well hidden. An amputated jaw can’t be seen by the human eye and his injuries to his upper arm can’t be seen when he has on a shirt. His brain injury is as real as any other type of injury but we can’t see it and to many people it is not a “real” physical injury. The PTSD is always interesting because people’s perception of PTSD is that the individual dealing with it is violent or suicidal.

I am tired though, after years of being my husband’s caregiver, advocate and still trying to maintain my role as wife and mother. I have also had to add to it a job, because he is not ever going to be able to work in the fields he used to and even retraining is going to take a lot of time. The support seems to focus on the newly injured and the families who have been walking this road for years find themselves trying to navigate the new path they are on after so much intensity that we break down. Physically, emotionally and spiritually we reach a point where we have little to nothing left to give.

I am fortunate that I find strength in my faith and that we had been married so long when this happened. The families dealing with the injuries and traumas of combat will need a LOT of support and the public in general needs to realize that although we have faced some giants, there will be many more for us. I do believe that our military, our communities and our people in general wan to support wounded warriors and their spouses however I don’t think they necessarily know how to.

I would encourage you, if you are reading this to reach out to one of those families and ask them specifically what it is they need. Is it someone to sit with their service member so they can get out for an hour, someone to help with yard work or to provide a meal once a month to give the caregiver a night off? Are they willing to contact local businesses to find support for the caregiver self-care that so often we do not get time to do? Is there a family who the caregiver needs the opportunity to work? Can a business or program offer opportunities for them to work from home to continue caring for their warrior but still generate an income? The impact of becoming a caregiver can often wreak havoc on the family’s finances. Can you offer to help out with their children, can you contact support services in the community to support the children?
I used our experience to become involved in creating a nonprofit that offered free online training in entry level careers for military spouses and caregivers of our severely injured and ill service members called Operation Life Transformed. In October of 2009 Inova Health System became a partner of Operation Life Transformed and we became a part of their Military to Medicine program. It is my goal and my passion to reach out to other military families and at least address one of the myriad of issues confronting our military families today.

I am not the wife of a man who would be in a nursing home without me however even he knows I am the grease that keeps the family engine humming. It is much less expensive for tax payers to support the caregiver of the service member who has been seriously injured than it is to have the system to care for them and it is better for the service member too however, without the necessary support the families break down and bitterness can set in.

I have been involved in so many wonderful programs but urge people to understand the need for ongoing support for these men and women is not going away any time soon and as someone who has done this a long time I know that the struggles are as unique as the injuries of the service member. As a community reach out and give back to families who have given all they could to do their duty.