Powerful Story from a Caregiver


caregiverAs the months tick by for 2015 and everyone gears up for the holidays, my inbox becomes inundated with not just holiday hellos and invitations for festive events that only come around once a year, but questions and newsletters pertaining to something I experience everyday. November is National Family Caregiver Month, and as the years roll by, I am grateful that I have more information to share on the subject than questions to ask.

There are more than 65 million caregivers nationwide, and they offset the cost of care for ill or disabled persons by about $375 billion dollars. (Caregiver Action Network). There are 5.5 million military and veteran caregivers within those numbers (Elizabeth Dole Foundation), which is where I fit. And while there are days and a month dedicated to honoring the military and veteran caregiver, November is about all of us caregivers. I often find myself sharing and listening to caregivers of all kinds, whose charges are young, old, dying, rehabbing, or just coping with chronic pain and illness.

For some caregivers, we took on our roles slowly. A spouse, child, or parent became ill and got worse. Their responsibilities accumulated over time. Some have always had assistance. In cases of paralysis or coma, many have always navigated home health care along with their own duties. Others experienced a sudden, single event that forever changed their lives. There are many ways families experience this journey.

My story fits a common military family narrative: One day, everything was business-as-usual for me and my husband of 18 months, Aaron. He was an Explosive Ordnance Disposal technician on a combat tour in Afghanistan. After a few months behind a desk, he had been sent out to “work” again, finding and disarming Improvised Explosive Devices. He was much happier doing this than running operations, which made for a smoother if not more worrisome (for me) deployment period. Then, on September 7, 2011, our whole lives changed forever. He went to investigate a possible device and detonated one under his feet. He was blasted into the air, and by the time he landed, both legs were severed. Eventually, this moment led to above-knee amputations, extensive soft tissue damage, amputated fingers, arm damage, a head injury, and sites needing large skin grafts. But all of that, along with dozens of surgeries, infections, physical therapy, setbacks, and seventeen different pills a day, would come later. What came first was my notification of his injury incident, and then the support network that would keep me going in the coming days.

In the military, a family member often enters this caregiving and wounded warrior world in similar, sudden fashion. There will be a phone call or visitors from another company in the same battalion; the family member will receive the most pertinent information first and as days go by, more details will come in. Travel arrangements will be made. The family might have to move very suddenly. There may be weeks or even months at a hospital in Germany for very critical patients, and then years at a stateside military facility. But the very first thing set into action after notification, is surrounding the family member with a functioning, productive support network. I am going to offer some pointers on how to be the friend of a new caregiver. I am a very fortunate woman and thankfully, was immersed in love and support almost immediately. It was vital to my success and contributes to who I am today, even four years later. A lot of what I experienced is universal for all families who suffer a sudden tragedy and massive adjustment afterwards.

After Aaron was injured, three other families I knew personally also joined this “club,” so to speak, so I have some idea of what it feels like to hear that a friend’s spouse has been very seriously injured. It is almost immediately nauseating and mentally hard to understand. You might have very strong feelings of your own. It is a very strange emotion, indeed, when you realize that someone you had seen healthy and whole not too long before would now look or behave totally differently from that moment on. Do what you need to do to calm down and only then, reach out. You will want to help, but might have no idea what to do. If you are living nearby, you will definitely be needed.

In terms of the military, some people around me knew before I did that Aaron had been terribly injured or at least, that something bad had happened. I found this beneficial. If you are a spouse living near the military installation of service, this is definitely something to bring up in pre-deployment meetings. Do you want your Family Readiness Group leader (or branch equivalent) to know ahead of you? If someone does know some details before you, she (as it is most often wives) can set a care team into action quickly for you. Two of my “battle buddies” were at my house within minutes of my phone call to one. Not being alone in the immediate hours after notification is definitely something to strive for. In my moments, I asked for a chaplain to come over, but it was several hours before that happened. I also asked for assistance in telling Aaron’s family, since I wasn’t sure on the details and did not want to confuse anyone. If this is your friend trying to notify her own family members, she will need support. I did not think to organize a “phone tree,” but thankfully someone else did. I only updated a few family members at a time. In between receiving information and calling people, all I could do was wait.

I cannot imagine waiting alone or even having the burden of consoling me be on one person for an extended time. I was very lucky to be close with my husband’s commander’s wife at the time, and took an educated guess that she at least knew something had happened with one of the troops at that point. I rang her and simply said, “I need you now.” Knowing what was to come, she had already gone to a nearby friend’s house. They came armed with wine and tissues for me, knowing that they were in it for the long haul. Throughout that day, more friends came and went. True friends — the kind who knew that I could not be alone at all for the next several days. Information about my husband’s injury became jumbled at some point, and my friends helped me navigate shifting through that.

Logistically, I needed to begin to plan for several things. First, I had two dogs I knew I had to leave with someone for an extended amount of time. Flights were arranged for my sister-in-law and mother to fly in, and I would need help getting them from the airport over 70 miles away. I did not need to be driving that soon. I learned that I could be flying to Germany to be with Aaron at the military hospital in Landstuhl, so I needed to get ready to travel. I also knew that in the short-long term I needed to arrange for my things to be packed and stored, all without my presence. There were cars to drive down to Maryland, where Aaron would receive treatment at Walter Reed National Military Medical Center. Thankfully, I knew the military would assist with that and I had friends to help with that, too. None of this would be possible without help.

This is consistent with most experiences like this. Things become exponentially more complicated for very pregnant wives, families with young children, and those living farther away from a military base. If your friend is going through this, offer something specific: a meal (which was done for me multiple times, ensuring that I got out of my own lonely house and ate a bit), help with pets or children, or running an errand. If need be, pay close attention to your friend and check to see if she needs to go to the doctor for sleep or anxiety treatment. I know that I was one more phone call or bad news detail away from needing immediate care. Again, if it were not for my friends there for me, I am not sure how I would have gotten through at all.

One of my fondest memories of my life is my send-off meal. Earlier that year, it had been established that those of us without husbands (either single or ours were out of the country) were going to celebrate Thanksgiving at another friend’s house. She was an excellent cook, and far more domesticated than the rest of us. When it was determined I would travel to Germany and from there to Maryland, we knew we wanted a chance to be together before I left. We had Thanksgiving dinner in September. I was the only person not to contribute something, but everyone was in good spirits nonetheless. We all cried and ultimately laughed that evening. I had never felt so loved by people who weren’t my family, and all by women I had known no more than a year. If your friend must leave indefinitely to tend to her loved one, try to have a good meal to send her off. Even if you all go to her house and help her tidy up or pack for an extended stay away, get together.

caregiver

Specific to the military culture, I also decided to meet with the other wives in the unit and those in the sister company who knew our situation. This allowed me a chance to answer any questions they had about my notification and also, to feel that I had done something positive. It gave people who weren’t close to me a chance to do something. Other Soldiers brought cards and challenge coins. The FRG leader of our company was kind enough to host in her home. It might have felt like a wake in some moments, but we were all there to support each other. Even though my experience with the deployment had come to a disturbing close, theirs was still going on and in many ways, we were still in it together.

Now, the immediate days and weeks after someone becomes a caregiver to a catastrophically wounded spouse are actually the easiest part. I know — it sounds depressing, right? But it’s true. It’s when time drags on that things get tough. I know that in the year after the initial incident, I was a very tough person to love. Even when friends made trips to see me, I wasn’t the best person to be around. I was incredibly grateful to see people who cared about me and my husband, but I wasn’t mentally able to be a good friend. Once, I drank entirely too much because I had not drank at all in the time since we arrived at the hospital. I was definitely embarrassing to be around! Other times, I am sure I was snappy and judgmental. I did not return calls. I missed emails. Aaron received a thousand (literally) cards and many financial donations — I am not sure I was able to send a single thank-you. I checked out of people’s lives. I also lost a dear friend to a car accident during this time, which only compounded my grief for my husband’s injury. There were spats with other women and family.  In other words, I was one messed up lady. I could hardly handle my own self-care and Aaron’s, let alone be a good friend. This is by and far one of my biggest regrets about my handling of my new life, but I also give myself a little leeway, since I really was doing the best that I could do.

So if your friend checks out, please be patient. Entering this life is not a “free pass” to be a jerk, but remember that the first year is the hardest — much like any huge life change, like parenthood, the loss of a family member, a big move, or job change. Entering caregiving and a life of disability is not any different. As long as she doesn’t try to run you over with her car, please keep an open heart. She is changing and growing in ways she had never even thought of before, and will be a stronger, better person on the other side. It will be worth it and she will value you even more for sticking around. I know that I have extra love in my heart for those who struggled with me, but saw it through. I will always have a place in my home and life for these people.

As a caregiver to a wounded warrior, I also struggled with immense guilt. There were many setbacks in recovery, along with coping with how this injury had changed my marriage. Many people felt the need to remind me to remain grateful that Aaron had lived, as if I could forget what the alternative could be. I can assure you, I do not forget for even one hour of the day that I could have buried him instead of caring for him. I saw him days after he stepped on a bomb. He looked like someone who could die any moment. I wouldn’t allow for pictures for nearly two weeks because I really did not want to remember him that way. It is not as simple as being grateful that he lived. I have widow friends, and even Gold Star caregiver friends (those who cared for their warriors, who then died). I enjoy these friendships because they, above all, understand the alternative and still allow me room to grieve, rant, rave, gripe, and then move on. But it has taken me a long time to come to this point. I had months of feeling terrible for complaining about my husband or his recovery, even when the complaints were justified. So if your friend seems distant or isn’t saying much about their new situation, let her know that she can open up to you and that you know she isn’t wishing for a different life. She is just overwhelmed and needs to vent — like every one of us needs to do from time to time.

Kat and baby

Most of us, especially women, will take care of an ailing or injured family member at some point in our lives. I hope it is temporary and there is support for the caregiver when that happens. If you would like to educate yourself further on what caregivers face, please check out The Elizabeth Dole Foundation, Caregiver Action Network, and the Bob Woodruff Foundation (Lee Woodruff has great insights into what becoming a caregiver felt like for her and I respect her immensely). For transparency, I am a Dole Fellow with EDF, and am very proud of the work I have done with them in raising awareness and lobbying on behalf of military and veteran caregivers. I have tried to turn my lemons into lemon icebox pie with anything I can do to educate people on what this life is like for me, my husband, and others like us. This has affected every aspect of our lives, from daily living to fertility. We will never be the same again. The patience of my good friends and family matter that much more every day.

 

Kat CaregiverKathleen Harris Causey has spent the last four years advocating and educating on caregiving, wounded warrior, and disability issues, from speaking on fertility to introducing First Lady Michelle Obama. She is currently the Alabama Fellow for the Elizabeth Dole Foundation. She was also featured in the award-winning short documentary “The Next Part” and is currently going to be co-featured in the Lifetime Network special “Women of Honor,” airing November 9th. She blogs at Coming Home Causey and has freelanced for other sites, including Disability.gov and news site HLN. Kathleen is the proud wife of SFC (Ret) Aaron Causey and the mother to their miracle, Alexandra Jayne. They reside in Birmingham, Alabama near family but their hearts are all over the world with friends gained during their journey as a military and warrior family.