Are you a leader or a follower? Do you work well with routine or spontaneity? Can you muddle through mundane tasks or are you best when challenged with high-pressure situations? Do you like giving advice or prefer being an active listener?
When my son Cullen was diagnosed with pulmonary hypertension (PH), I don’t know how I would have answered those questions. Now, 13 years later, I believe all answers apply.
In a previous column, I wrote about the challenges my son and I faced as he transitioned from pediatric to adult care. In retrospect, caring for him has always involved transition.
Cullen was 8 when he was diagnosed, and aside from being a mother, I had almost no caregiving experience. Those skills needed to grow and adapt as he did. As a transplant recipient, and now an adult, Cullen’s medical needs are still prone to frequent and sometimes drastic changes that force me to adjust my role accordingly.
Over the years, I have learned that being able to efficiently and compassionately adapt to change is the most valuable quality to have. This requires reaching deep within yourself to embrace different sides of your personality and developing new skills.
According to the employment consulting company Hire Success, people generally demonstrate four personality types.
Type A is a director type, who is goal-oriented, a risk-taker, and good under stress.
The obvious goal of caregiving is to help your patient maintain their physical and mental health. Unfortunately, pursuing that goal can be risky and stressful.
Every time Cullen endured a right-heart catheterization, we worried about potential complications affecting his fragile heart and lungs. Despite the risks, they provided valuable information that helped track the progression of the disease and enabled the doctors to formulate a treatment plan.
I have always been goal-oriented, but I wouldn’t have considered myself a risk-taker until I had to make tough decisions and accept heavy responsibilities, as we fought to keep my son alive. To complicate things further, sometimes the riskiest option offers the greatest reward. Cullen’s ultimate risk was getting a heart and double-lung transplant. It was successful, and soon he will celebrate seven years of living that he otherwise never would have had.
Type B is the socializer. They are usually relationship-oriented, outgoing, and enthusiastic.
Above all else, I am Cullen’s mom. This has always motivated me to put forth my best effort in every aspect of his care. Being outgoing and enthusiastic has played a huge part in caring not only for Cullen’s mental health, but also mine.
I started by connecting with other PH patients and caregivers through social media support groups and places like Pulmonary Hypertension News. And I always jumped at the chance to meet people in person.
Being a caregiver who is open to socializing with others in the PH community has had unexpected benefits. Besides talking about PH, I have found myself sharing other aspects of our lives. We have laughed and cried with our PH friends and created special memories over the years.
Type C is the thinker who is detail-oriented, logical, and prepared.
In my opinion, these traits are essential to the role of the caregiver.
Organization has been key to handling medical supplies, insurance, prescriptions, note taking and medical history. I’ve prepared for doctors’ appointments by writing down concerns and questions. And keeping a bag packed and in the trunk of my car has been a timesaver during unexpected emergencies and hospital admissions.
The biggest challenge for me has been times when I had to think more with my mind and not my heart. Logical decisions are sometimes the most heartbreaking.
Type D is the supporter. They are often task-oriented, stabilizing, and cautious.
Being a caregiver involves tasks at home and in the hospital, and every aspect of care requires some level of caution. And don’t underestimate the stabilizing effect of active listening. Sometimes silence is the best support you can offer.
Trying to be a perfect caregiver is unrealistic, but you can strive to be the type who works hard to adapt to the changing needs of your patient.
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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