Take Care of the Aging Caregiver

Colleen Steele avatar

by Colleen Steele |

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Why do some people look younger the older they get? Not me! I turned 49 yesterday, but the woman in the mirror looks much older.

I recently read an article that compared pictures of U.S. presidents from the year they were sworn in to the year they left the Oval Office. Let me just say that their appearance in the latter reflected the stress of their job.

I can relate to their premature aging because, as a mother and caregiver to a son with rare and life-threatening medical concerns, I often feel like I carry a country on my shoulders, too.

My son Cullen was diagnosed with pulmonary hypertension (PH) when he was 8, and at 14, he received a heart and double-lung transplant. In my defense, 12 years have gone by. But when I look at pictures from the day PH entered my life and now, I can see a depressing transformation.

When I was in grade school, I took voice lessons, and I struggled to remember to smile while singing. My teacher would remind me that it takes more muscles to frown than it does to smile. Now that I’m older, I can see the truth of his words written on my face.

Some hospital food is not as healthy as you would expect it to be, and fast food has often been my saving grace on busy medical appointment days. Years of poor eating habits and copious amounts of coffee have not helped my girlish figure or my energy.

Thankfully, I have my dad’s great hair. He didn’t start graying until his late 80s, and I believed I inherited his roots. But this year, I’ve been finding the occasional gray hair while brushing, and they always seem to pop up on stressful days. You won’t see them because I yank them out and half-jokingly ask my two sons which one gave them to me. I need to stop doing that before I go bald.

What saddens me the most is the change I’ve noticed in my eyes. I don’t think they shine as brightly as they used to, and they often look so tired.

It is said that appearance isn’t everything. How I feel should also be important, but unfortunately, I feel tired, too. Prior to Cullen’s transplant, I worked full time, took care of his medical needs, loved and parented him and his brother, was a devoted wife, and maintained all the other responsibilities that come with adulthood. When I look back on those years, I don’t know how I did it.

I’ve felt some guilt for falling asleep during Cullen’s eight-hour transplant surgery. It might be hard for some to understand, but I think a part of me felt like I could finally slow down and close my eyes. As I drifted off to sleep, I encouraged myself that everything would be OK.

Cullen has been fortunate to celebrate six years and counting post-transplant, but it’s taken lots of care and advocacy to get him this far. Things have been better than OK since Cullen’s PH days, but they remain medically busy.

The sleeper chairs and pull-out hospital beds that I used so often when Cullen was a pediatric patient feel almost unbearably uncomfortable now. My mind isn’t as sharp as it used to be, so I rely a great deal more on note-taking to help remind me of questions I want to ask and to remember the answers the doctors give. As I wrote in a previous column, I also find myself feeling more anxious as I age.

Some of my decline is natural aging, but I could have taken better care of myself. I always make sure Cullen doesn’t miss appointments and that every health concern is promptly addressed. But when it comes to my own health, I tend to avoid dealing with it. I’m behind on doctors’ appointments, and my birthday resolution this year is to make them, keep them, and follow the instructions the doctors give me.

It’s uncomfortable writing so openly about my appearance and overall health, but I’m hoping I can encourage other caregivers to avoid neglecting themselves. If you can relate to any of this column, then try to take control of your bad habits now before they catch up to you.

I don’t know if the former presidents would have wanted to do it all again, but I do. Cullen has been worth every wrinkle, gray hair, and pound gained, but in a do-over, I would remind myself that I’m worth taking care of, too.

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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.

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