A Caregiver’s Journey Home

Some say that you can never go home again. I find that such a sad notion, and I recently convinced myself it isn’t true.

I traveled to the other side of the country to pay a long overdue visit to my parents and several friends and family members I haven’t seen for a long time.

It didn’t surprise me that many things had changed. I drove past my childhood home and saw that the pussy willow tree that used to tap on my bedroom window is gone. Landmarks I passed on my way to school are no longer there. My former grade school and church buildings still stand, but the names have changed. The list goes on.

Being in those places brought all the memories flooding back, which was enough to make me feel at home again. With a nostalgic heart, I remembered people who have died, and those like me who moved away.

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A common concern when returning home is how much people have changed and what they will think about the changes in me. It’s inevitable. We all age and have a plethora of life experiences that can alter our former selves. But this trip home reminded me that all that matters is whether I still care about them and they still care about me.

My son Cullen battled pulmonary hypertension for many years until he received a heart and double-lung transplant seven years ago. It saved his life, but also became his next survival challenge. Thirteen years of intense caregiving have changed me in ways that are probably more evident to those who haven’t seen me in a while.

Now an adult and in stable health, Cullen knows how to advocate and take care of himself. I felt confident that I could finally relax and take a few weeks off from “caring.” I thought a visit home might help me return to a calmer state of mind. But one thing that experience has taught me is that fate can have a wicked sense of timing.

While vacationing this month, Colleen visits her mom, who is recovering from a recent fall. (Courtesy of Colleen Steele)

The night before I arrived, my mother took a nasty fall. I knew something was wrong when she didn’t get out of the car to hug me at the airport. As she filled me in on what happened, I went into caregiver mode. If it were up to me, we would have headed straight from the airport to urgent care.

Mom didn’t want to go, and as her daughter, I tried to respect her decision and believe she knew best. But by morning, I regretted not following my instinct. I called an ambulance to take her to the hospital. X-ray results explained her excruciating pain: Mom had fractured her sternum.

Colleen’s dad celebrates his 91st birthday, on Aug. 15. (Courtesy of Colleen Steele)

There wasn’t anything to do except take her home and help her through the slow healing process. I know my father would have done his best to take care of her, but considering he was about to turn 91, perhaps fate had intervened.

Although my parents needed my help, it took a great deal of patience and persistence for it to be accepted. Caring for aging parents isn’t quite the same as caring for a child.

It felt like a tug of war between being stern but respectful when helping Mom understand that her normal routine wasn’t practical in her current condition. The stairs up to her bedroom were a challenge, so I worked to convince her that sleeping downstairs in a comfy chair might feel better than lying flat in bed. It was a challenge getting her to eat when her chest pain was depleting her appetite. And I did my best to help her understand the importance of physical therapy, the necessity of specialists and additional appointments, and why her medications were changing.

I felt both terrified and guilty, knowing that I would soon board a plane and leave my parents to fend for themselves until I can make arrangements for an extended stay. For this visit, I focused on safety by purchasing a shower chair, organizing things as best I could, and teaching Dad the most effective ways to help Mom.

My experience caring for my son guided me through this process, but what I was doing for my parents also reflected how they raised me. I credit them for providing a home environment where caring was always the priority.

I’m also grateful to friends and extended family who reached out to me during this difficult time. Through their support, they reminded me that home is a place where I can always return.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.