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Weathering the Storm: When Caregivers Need Care

Weathering the Storm: When Caregivers Need Care
Caregiver Blog

Cancer does not discriminate, and it does not come it a convenient time. There is never a right time for your worst fears to come true. For some, cancer will prematurely end their lives, and for this group, cancer is particularly ugly, unfair and brutal. For me, cancer was inconvenient and indiscriminate, but it was not the first storm that I lived through.

My life was turned upside down in May 2010 when I received a phone call while my husband was deployed to Afghanistan. I was 26, married for less than a year, and trying to keep it together despite the palpable distance and danger. The voice on the phone said my new husband, Marine Sergeant Johnathan Rose, was very seriously injured. He was stable but critical. He was burned and had many broken bones. More information would come over the next few days, but that was the start. That phone call started the storm that has been brewing for 9 years. At some points, our life has had hurricane-level winds and flash flooding, and at other times, it’s only been cloudy with the threat of thunder. Since that day, though, one thing has remained consistent: it’s been impossible to forecast.

We were always sure we were ready to resume the life that we had planned before my husband’s injuries, but it would take three years of surgeries, medication schedules, burn wound care, occupational and physical therapy and inordinate amounts of paperwork for my husband to leave the hospital and return to the fight. During that time, I worked on and off as an occupational therapist, cared for my husband, at times exclusively, and learned to dance in the rain. This journey has not been an easy one. It has included dark, depressing, anxiety-ridden days, but we are truly the lucky ones. He was alive. We had each other. We could weather the storm, and we would need the skills that we learned during this time to guide us through what was still to come.

In 2012, a few months before we were to move to my husband’s new duty station, we were involved in an accident. It was the kind of accident that doesn’t seem real. You don’t see it coming and could never predict it. We were participating in a Veterans Day parade, and the float we were on, with other wounded warriors and spouses, was hit by a train. This horrific accident claimed the lives of four powerful, kind and family-oriented warriors. We were injured, me more so than my husband, with a broken collar bone and breaks in my elbow and the bottom of my spine. Again, though, we were going to be okay. We were alive. The levies wouldn’t break. We had each other, and this time we had the skills to navigate the medical system; we had a large network of support; and we had new skills to help us through our recovery.

We lived under the threat of a storm for about 4 years after this. I personally struggled with panic attacks, survivors guilt, depression and a whole host of symptoms related to the trauma I had experienced. I worked with a therapist, started meditating, did lots of yoga, and began to heal from the inside out. This is when the inconvenient, life-altering, fear-inducing cancer entered our lives. Breast cancer. Stage 2a. 2.1 centimeters and contained to the breast.

Our story may sound unique, but I can assure you that it is not. Being a caregiver to my husband did not give me breast cancer, but I am one of the many military caregivers that must care for their loved one while also being a recipient of care. Being a caregiver to my husband did not give me breast cancer, but caregiving does take its toll. A study commissioned by the Elizabeth Dole Foundation found what so many other studies have shown again and again: caregivers have consistently worse health outcomes than their non-caregiver peers.

When I was received my cancer diagnosis, it was six years after my husband’s injury. Thankfully, he did not require large amounts of care. The care I provided at the time was more nuanced: reminders to make appointments, help realizing when he was stressed out, emotional support, household administration, and managing the daily, pain and fatigue that comes with recovery from severe injuries. While we still had – and continue to have – profound gratitude that he is largely independent, my caregiving responsibilities added another layer of worry of my cancer treatment. Everything was about to change again. We had finally found a groove and some sense of normalcy amongst the chaos. We had rebuilt our lives after two personal hurricanes. How could we survive another? Would I survive at all?

This is the plight of caregivers everywhere. How do you get the help you need while still fulfilling your role for your loved one? To manage the shock, I became productive and list-oriented. I went through the motions of cancer: preparing for surgery, managing side effects, driving hours to receive care, researching doctors and treatments, and all the other daily responsibilities of fighting a life-threatening illness. My husband was incredible during this time, but he was hurting and scared and not quite able to express it. I didn’t see his pain until things got worse. I had finished my second-to-last chemo infusion; I was bald; and I was starting to feel the cumulative effects of treatment. We were excited to spend the day at a picnic with my work family. It was hot, and while I had hydrated, it was too much. I passed out. When I regained consciousness, my husband was holding my head, protecting me from falling, and quite literally supporting me. While he tried to be strong and tried to play it cool, I could see the fear behind his eyes. It was a look that I was very familiar with. I had given it to him many times.

For caregivers, it is sometimes more difficult to watch your loved one suffer than to be the one suffering. When my husband was getting needles in his eyes, it was definitely worse for him than for me, but there are times when the uncertainty is maddening and when the sight of your loved one suffering is too much to bear. I realized this on the day that I passed out. When I woke up, I knew I was okay. I knew that I would be fine. John didn’t have that certainty. All he saw was his wife losing consciousness without any idea of what was happening. I knew exactly what that out-of-control fear felt like. I had experienced that for years through his surgeries and his doctor’s appointments, and my heart ached for him.

Throughout my cancer treatment, I was exhausted, worn out, experiencing side effects from chemo and managing pain from surgery. Years later I would realize that I was still trying to care for my husband, so much so that before my surgery I made him a book. The picture book chronicled our love story, the storms we had weathered together, the force we had become, and the hope I had for the upcoming months. I wanted to reassure him that he was more than capable and that we would once again weather the storm.

Breast cancer awareness month brings up a lot of emotions. Every year, I reflect on my journey and try to educate my friends and family on issues in the community. I was young when I received my diagnosis. I had no family history of breast cancer and no reason to be suspicious, but thank goodness I was. I found the lump in my breast during a self-exam and that exam probably saved my life. It could very well save your life.

As with many diseases and injuries, the real fear begins after initial treatment. Approximately twenty to thirty percent of breast cancer cases will metastasize to other parts of the body. Metastatic breast cancer is the only breast cancer that will kill you. For my particular type of cancer – hormone-sensitive, low-stage breast cancer – there is no “out of the woods”. If it comes back, it is typically 5-10 years after the initial diagnosis and outside the breast, often in the bone, lungs or brain. This is a scary statistic, but a daily reality for people who have experienced breast cancer. I will take daily medication and monthly shots, with intense side effects, for 5-10 years to hopefully prevent any recurrence. I manage my mental health through exercise, meditation and writing, which has helped me keep my gratitude at the forefront of my mind while I navigate a life with a gloomy forecast.

Our storm isn’t over just because my husband is still in the Marine Corps, or just because my hair has grown back. Caregiver and care recipient are lifetime roles. When the dust settles and the acute phases of injury and illness are finished, the real work starts. Picking up the pieces and rebuilding is not easy, especially when you have to rebuild over and over again.

My husband and I have learned to make our own sunshine by laughing at how impossible our life has been, by being thankful for each other, by embracing all that we have, and by focusing on our hope for what is to come. We feel a sense of duty to share our story and the lessons we’ve learned in the hopes of building a community, raising awareness, supporting those still in the fight, and honoring the legacy of individuals and families that fought bravely, but made the ultimate sacrifice. While we still struggle and work daily to find our footing, we are so grateful to have a chance to see tomorrow, whatever it may bring.

– Colleen Rose, Washington DC Dole Caregiver Fellow