My Son Is Taking Over His Own Care Management

My Son Is Taking Over His Own Care Management
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In last week’s column, I discussed my son Cullen’s transition from pediatric to adult care at a medical center not associated with his previous team. My focus has been on preserving the level and quality of treatment that led to almost six years of post heart and double-lung transplant.

His new doctors have already proven that they will incorporate the experiences and lessons learned up to this point into his future care. Now it is my turn to prove to both Cullen and his new medical team that I will do my part in making this transition go smoothly by not being a back-seat driver.

Cullen is an adult and in the driver’s seat now. I am the passenger, available to give directions and perspective when asked but no longer the chauffeur on his medical journey. I already have wanted to tap the imaginary brakes a few times, but I hesitated, and he kept going without incident.

I am learning that this transition is not just about trusting the new doctors, but also trusting Cullen. This means allowing him the freedom to prove what he already knows, and the space to familiarize himself with the adult responsibilities that come with self-advocacy.

With this goal in mind, I am training myself to keep quiet as he learns how to drive the transition. I have heard him ask questions I know the answers to, but I remained silent and let him learn from his doctors the way I have.

Just as challenging is not answering questions for him. He has always relied on me to be his voice, but now he needs to find his own. I have held my breath to let him talk and calmly exhaled when his responses have been on point. This is not to say that he hasn’t looked over at me for help with some details. But what is important is that he is making a great effort to answer what he can on his own.

Since he was a child, he has requested that we not keep details about his health from him. It was not always easy to hear, but he wanted to know the reasons behind the decisions being made with his care. His dad and I have always tried to respect his wishes, and I think that has contributed to him being the confident adult patient he is now.

Also helping him to be a responsible driver throughout this transition is a binder I created that contains his medical history and current treatment plan. Initially, I thought it would be most beneficial for the doctors and nurses, but it has helped Cullen a great deal, too. When uncertain about something, he has the option to refer to it instead of me.

Even when checking in for appointments I have literally taken a few steps back and let Cullen handle it on his own. When offered the patient privacy and terms of service paperwork, I usually decline, but he has been taking and reading them. It is important that he knows and understands every aspect of his care from check-in to check out.

I think the important part of being a parent-caregiver of a pediatric patient transitioning to adult care is to accept that you are no longer the primary advocate. Your input may still be appreciated, but your child is now an adult and ultimately responsible for making their own decisions.

We are still working through Cullen’s transition to full autonomy. Because of the challenges and complexity of our healthcare system, I am still advocating on his behalf with pharmacies and insurance. I also help monitor his health at home and assist with scheduling appointments.

Cullen knows all his medications, when he takes them, and what they are for, but I continue to fill his weekly pillbox. It is not out of necessity or as an advocate that I do so, but as his mother. Cullen is not my patient, he is my son, and in whatever ways, big or small, that I can make his complex needs less stressful, I will. It is a way of letting him know that I’m still here for him whenever he needs me.

I am optimistic that Cullen will continue to develop his ability to answer questions and speak for himself during appointments and procedures. But I will remain prepared to be at his ready during any future challenges he might face. Whenever he feels weak and tired, I will take the wheel for him and help advocate to get him back on the path to wellness.

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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.

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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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