Caregiver Truth Discovered On a Boat One Day

Caring for my daughter is the hardest thing I have ever done. Her care is ever-present. Emily does not possess the ability to assist in her care. Every day, I prepare her meals, feed her, dress her, give her medication, and handle her personal hygiene. The moment the last item is checked off the list, it is time to rinse and repeat. In addition to the hands-on physical care, there are calls to make, prescriptions to fill, insurance claims to fight, and a never-ending battle for services, equipment, or accessibility. I recognize this work is exhausting, and I need breaks from it. My rare mom’s radar constantly searches for additional caregivers to add to my contacts to assist and aid in Emily’s care. Finding others who are well-suited to work with Emily and willing and able is time-consuming too (but essential).

After nearly a decade of riding the caregiving train with little more than weekend respite, I was in desperate need of an extended break. The month of September is brimming with reasons to celebrate in our family. This year, I was turning 55, and Todd and I would celebrate 31 years of marriage. Birthdays come each year effortlessly, but maintaining a marriage is something that requires much effort. These moments, especially anniversaries, deserve to be celebrated and acknowledged. In a perfect world, we would celebrate them together, but Todd and I are not your typical middle-aged couple whose kids have all flown the nest to take on college and careers. Emily is never flying from the nest. The reality is Todd and I rarely get to travel together. Our dreams of traveling to Australia or Europe when our kids grew up have been sidelined by caring for our daughter. It is a choice we make together, and we understand the parameters of our circumstances. 

As my birthday got closer, I began daydreaming about taking a cruise. A cruise is something I have never had the opportunity to do. I also wanted to experience fall on the East Coast. My dear friend found a great rate on a cruise that explored New York, Boston, Main, and Canada. The cruise had a 9-day itinerary, and I couldn’t imagine making it work, but my desire to go was gnawing at me. Todd and I had a long discussion, and we figured out how to make it happen. There were some snafus with weather and ports. Both Boston and Maine were axed from the itinerary. This was beyond our control. My friend and I rolled with it. We spent 2 days exploring New York City. When the Norwegian Joy finally docked in New York, we set sail at our designated time.

Corry and I had a blast. We ended up being at sea on my 31st wedding anniversary. I celebrated the occasion at the steakhouse on the Norwegian Joy with Corry. We enjoyed steak, wine, and a musical on the ship, while Todd was at home holding down the fort. We joked that we should have brought a life-size cutout of Todd so he could have been included. The night was bittersweet, but I was grateful and joyful to have this incredible experience. I was grateful that Corry handled every detail. All I was required to do was pack and show up. As a caregiver, it is a wonderful gift when others make decisions for you. When they decide where we should go and what we should do, they plan it. What a fantastic gift to give a caregiver.

Somewhere between Peggy’s Cove and Quebec City, I started to feel unwell. I was down for the count on 9/11 and spent that evening in the cabin alone. It was the end of the trip, and I remember lying in bed and crying. At first, I thought my tears were because I was letting my friend down by bowing out on the evening activities. We are great traveling partners. We both want to squeeze every bit of goodness out of the experience. We hit the ground running when the sun comes up, and we ain’t going down until the piano man plays his last song. This evening, I couldn’t muster the energy in me to rally. 

As I listened to my thoughts between sniffles, they became clear. I wasn’t crying about disappointing Corry. I was sad the trip was almost over and I would soon be going home. I kept thinking I would rather be sick on a boat than at home healthy. The realization that my vacation was not long enough knocked the wind out of me. I knew I wanted to share this experience with other caregivers, but I was ashamed of these thoughts. I felt guilty for not wanting to go back to my life. As hard as it is to admit, this was my truth at that moment, and I needed to claim it. 

My vacation revelation reminded me, or maybe reinforced, that no matter how long I get a respite or reprieve from my caregiving duties, I will never be ready to return with joyful glee and open arms. Caregiving is something I do because Emily depends on me. Caregiving is not my passion, but Emily relies on others to care for her. For better or for worse, right now, I am that person. 

Here is a fun song to capture my I Was On a Boat That Day feeling. ENJOY!