Caring for the Caregiver

Caring for the Caregiver
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I have heard it said that self-care is not selfish. While I may agree with that consciously, my subconscious still has not quite embraced it.

When my son Cullen was diagnosed with pulmonary hypertension (PH), we traveled from Washington state to California to seek help from a specialist. We were there for several weeks as he underwent tests, procedures, and began treatments.

Despite the demanding appointment schedule and the inherent stress of having my child submitted to a myriad of tests, procedures, and medical consultations, I thought I was handling things fairly well. It was not until I signed up for a massage at the Ronald McDonald House that I realized I was not doing as well as I thought.

In a soothing voice, the masseuse repeatedly reminded me to close my eyes, relax my muscles, and let go of my stress. Seeing that I was struggling to comply, she offered the following insight and advice. I was right to feel worried for my son, but wrong to feel guilty about taking a brief break from the anxiety.

She suggested that I imagine myself lying on a cloud, and, as she massaged each part of my body, picture it slowly sinking into the mist. I was familiar with this technique, but with everything else going on, it had completely slipped my mind. I was amazed at how relaxed I felt when the session ended. Since then, I have used this cloud imagery to help ease my mind and body when I have trouble sleeping, or when my stress levels get the better of me.

As a caregiver, another challenge has been making and keeping my own medical appointments. I get so caught up in my son’s care, that I never seem to find the time or energy to take care of myself. Around three months ago, I injured my shoulder. Although painful, it was not until I began having mobility issues that I finally sought medical help. It was so much easier to live with the pain than to find time for myself in our busy schedule. My doctor said that I would have needed surgery had I waited much longer. Thankfully, two days of physical therapy for six weeks should restore my mobility.

One exercise I learned in PT would have benefited me years ago. I carry a lot of my stress in my back, and it is not always convenient to have someone give me a back rub. One way to hit those hard to reach pressure-points is to place a tennis ball in a pillowcase, lean against a wall, and allow the ball to roll over or around the painful areas. This tip would have come in handy during our many hospital stays, when my back ached from sleeping on hospital chairs or pull-out beds.

I made a Mother’s Day resolution to take better care of myself and change my thinking. Neglecting my health could affect my ability to care for those I love. Self-care is not selfish, and it is hypocritical to expect others to accept care when I am ignoring my own medical needs.

Another lesson I learned many years ago is the importance of delegating and allowing others to help themselves. When my sons were in grade school and Cullen was extremely sick with PH, I slipped on ice and broke my ankle in three places. I remember crying from physical and emotional pain, worrying about how I would take care of him with this injury. It was a long and difficult recovery, and I had to rely on my husband and children to take care of themselves, each other, and me.

But I discovered that my family was both willing and capable of helping with responsibilities I had been shouldering on my own. It took a broken ankle to slow me down and appreciate that caregiving should be a family role and not mine alone.

My advice to caregivers is not to wait for a drastic event to teach you the lessons I have learned. Evaluate your self-care now, and work to improve your mental and physical health. Join the Pulmonary Hypertension News Forum and share your success in the “Weekly Wins” subforum. It is a great way to hold yourself accountable to your goals.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

Total Posts: 3
Grace Frank worked as a copy editor, city editor, reporter and news designer for leading American newspapers, including The New York Times and The International Herald Tribune, for many years. She has won numerous journalism awards, and was nominated for a Pulitzer Prize for an investigative series into eye surgeries wrongly conducted outside a clinical trial.
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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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