Forever etched in my mind is an image of my oldest daughter, Maddie, sitting at the bedside of her grandma—my mom—at the hospice center shortly before my mom’s death. As if none of us were in the room, Maddie gently held and caressed her sleeping grandma’s hands, applied lip balm to her dried and chapped lips, and spoke to her. Maddie was only 14 at the time. It was one of the purest examples of love and caregiving I have witnessed.
But there are two sides to everything, especially when it comes to being a caregiver.
When our family made the difficult decision to move from our spacious four-bedroom home to the three-bedroom ranch of my childhood in order to care for my dad, the kids pushed back. I understood it. It wasn’t easy for me either. But, in my heart, I knew it was the right thing to do.
A New Normal
Over time, I watched my kids—and my dad—settle into our new normal. There were, of course, bumps along the way, but I wouldn’t trade that time for anything. I learned things from and about my dad that I’m not sure I ever would have if I wasn’t right there. It was such a blessing.
Still, the reality was that it was not easy. I rarely got a full night’s sleep, always listening for the sound of him getting up, worrying about him falling. I would often head upstairs to check on him, just like I did with my kids. My husband, Mark, and I worked hard to balance care for my dad with care for our school-age children, which could be exhausting.
Tough Decisions
Eventually, we had to make the hard decision to move my dad into nursing care. He had been adamant that he didn’t want to go. Oh, the guilt I felt having to tell him that we couldn’t bring him home. He needed a level of care that we just couldn’t provide. From that day forward, guilt became my constant companion.
In the years following, my sisters and I were a near-constant presence for him at his new residence, visiting him often. Every weekend, one of us would take him out for some adventure. On Sundays, I usually brought him home, where he would sit in his favorite spot, look out the back window, and take naps with our dog snuggled up on his lap. He was just happy to be home—even if only for a while.
It was a routine we maintained for years until COVID stole that time with him away from us. Guilt again reared its head. If only he could still be here at home became a constant refrain in my head. My sisters and I would drop off treats for him and send videos that the nurses would show him, but it wasn’t the same.
We were finally able to manage a wonderful visit with him, not knowing it would be the last one we would have. The following day, our family gathered around his bed, held his hand, and said our goodbyes. It was a holy moment. I remembered that I’d seen that example of love and caregiving years before. Suddenly, the blessings of caring for my dad came into clear focus.
The Stranger’s Presence: A Lesson without Words
It was on my second shift as a hospice volunteer caregiver that I met one of those teachers who changes your life forever. I’ll call her Sophia. Without ever saying a word to me, she taught me a vital lesson in caregiving: how to be deeply present with the tender awareness that transforms anxiety into compassion.
Like most new volunteers in hospice, I arrived at my shift full of expectations of what I could do and full of anxiety that I would only do the wrong thing. I arrived with a potential to-do list, expecting to be helpful by doing small tasks like clearing trays of food and answering phones. When I arrived that morning, the volunteer director said to me: “I’d like you to go and relieve Sarah. She’s been sitting with Sophia for over an hour.” After pausing for a moment, he asked, “Do you think you’re ready for this?”
“Yes,” I said, not really knowing what “this” was. Would I know what to do? I had lots of questions, self-doubt, and an unsettled feeling in my stomach.
As it turned out, I just sat with Sophia and worked to be present with her. I spoke to her, but she was unresponsive. I held the phone to her ear for her sister to say goodbye, but she remained still. I watched a couple of friends stop by her bed and pat her cheek, and then return to their work. After all the activity quieted down, I scooted my chair closer to her bed and held her hand. I whispered from time to time, “You’re not alone.” There was no indication on her intake forms that she held a particular faith or religion, so I kept my prayers to myself. But in time, I felt a poignant sense of peace surrounding us. After hours of stillness, she turned her head ever so slightly toward me, opened her eyes, and offered a faint smile with half of her mouth.
Just as quickly as she had turned to me, she closed her eyes again, as her breathing continued to slow with longer pauses in between each breath. A few minutes later, she gently let go of my hand and took her final breath.
I stayed by her bedside for a while, still sensing the solace and compassion that we had shared in her final hours. I considered others, including her family and friends, who would have wanted to be in my place but were unable. I quickly realized the privilege I experienced to be with Sophia and to learn from her in the last hours of her life. I had arrived that morning thinking I was there to do things for people. But as the morning unfolded, I experienced the gift of presence this stranger nearing her life’s end gave to me. That’s what happens when we can let go of the to-do list and simply be. We can touch each other even without words. —Darleen Pryds, PhD
