A Caregiver Support Program (CSP) Editorial Series

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Dear Fellow Caregiver

 
A Caregiver Support Program Editorial Series

Sofi Alexander is the caregiver for her husband, Jeff, a United States Air Force Veteran living with Traumatic Brain Injury. When Sofi first became a caregiver, respite care didn’t seem like a necessity. Now, respite care helps Sofi, Jeff, and their children navigate their new norm. Read about Sofi’s experience with the Department of Veterans Affairs, including the Respite Care program in her letter to other caregivers below.

Dear Fellow Caregivers -

My family’s new journey began two and a half years ago when my husband, Jeff, started a new job at the Pentagon after a three-year tour in Japan. He was active-duty Air Force, and we’d just relocated to Virginia for a Permanent Change of Station. And when I say we’d just relocated, I mean my husband had been in his new position for precisely three weeks, and our house for three days.

On the same day we moved into our new house, we received my husband’s bicycle. Three days later, my husband decided to go for his usual morning bike ride. As always, he put on his safety gear: helmet, gloves, and bike light, except this time Jeff didn’t return home.

I started to worry as more time passed and checked my Find My Phone app. To my shock his location read INOVA Fairfax Hospital.

My heart sank. I called Jeff’s phone, and a police officer answered. The police officer told me to get to the hospital immediately as my husband, “John Doe,” was in critical condition. I loaded up our two kids, 12 and 14 years old, and drove to the hospital. Upon arrival, we were told that Jeff had suffered a severe traumatic brain injury (TBI). They were not able to tell us anything except that he was non-responsive.

Jeff would stay in the Intensive Care Unit in Fairfax, Virginia, for roughly two weeks before he was transported to Shirley Ryan Mobility Lab, a rehabilitation center in Chicago, Illinois. Due to the severity of his injury, he was not able to be omitted to any Virginia hospitals.

So, there I was with two kids in Virginia who were about to start a new school and a husband severely injured at a hospital in Chicago. I will forever be grateful to Jeff’s family, who helped during this time, and to the Air Force, who made it all easier.

We started to move from the Shirley Ryan facility in Chicago to a more permanent home. He was relearning all daily living skills. We knew at this point that his career in the Air Force and being a pilot was over.

I researched TBI and poly-trauma facilities and found out that the Department of Veterans Affairs (VA) has some of the top facilities in the country. Armed with this knowledge and family in the area, I sold our house in Virginia and moved to Minnesota. Shortly after that, Jeff was transferred to the VA hospital in Minneapolis to continue his treatment until he arrived home. All of this was happening as the COVID-19 pandemic began.

While at the VA hospital, the children and I received training in caring for Jeff at home. The VA staff was very supportive of us and always there to answer questions and teach us as a family, even during the height of COVID. When you are in a new and challenging situation, you don’t always know what questions to ask, but the VA poly-trauma staff anticipated answering all of our questions.

Finally, the day came when Jeff was going home. All the training VA gave us was now going to pay off.

So many aspects of VA have helped us as a family. The VA technology department has played an active in improving our lives at the house, as Jeff still has no use of his hands. The VA Caregiver Support Program helped us navigate VA Home Health, including informing me of the respite program. Our respite support social worker, Molly, would call and check in on us frequently to see how we were doing. Molly kept reminding and encouraging me to use the Respite Care program before getting burned out. At that time, I was not feeling burned out, just excited that I had my husband home at our house. But little by little, tiny things started creeping up, and I began to acknowledge my stubbornness.

When it started to dawn on me, it was difficult for me to give up control over my husband’s care for my own care. It is easy to say, “if you don’t care for yourself, you cannot care for someone else,” but it is easier to care for others, especially when you feel they need it more than you.

As I was getting used to certified nursing assistants who I trusted to give me some extra time, I started thinking about the other respite care resources that I could use. With two busy children, now 14 and 16, both heavily into sports, we began to use the respite care for Jeff so I could attend their tournaments. During COVID and over holidays, it wasn’t easy to pin down nursing homes that could help. Still, the dedicated VA Respite Care staff did it. During this time, we were also connected with the Wounded Warrior Project who were willing and able to add some assistance in Jeff’s treatment. Throughout this time, VA provided me with a counselor who helped navigate family relationships and life after a traumatic event.

We are still in the early stages of Jeff’s recovery after two and a half years. I don’t know what the future will hold for us, but I do know that without the support of VA, we wouldn’t be where we are. I also thank the staff who kept contacting me even when I thought I was doing great, and at times I was great, and being there when the walls eventually came down.

Thank you,
Sofi Alexander

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