Advice About Advice: Sort the Good from the Bad

Advice About Advice: Sort the Good from the Bad

Advice is like a bag of Halloween candy. You take it home, dump it out on the table, and sort through it. One pile for the good stuff, another to cherry-pick, and one for what you know you will never eat.

As a mom and caregiver, I’ve had my fill of advice, and collected an abundance worth sharing. I have some favorites.

When my child was diagnosed with pulmonary hypertension (PH), his life was turned upside down with limitations, medications, challenges, and adult-sized fears. His doctor advised us to allow our son normalcy in whatever ways we could. When physically able, let him go to school. Encourage friendships and play, and don’t let PH define him.

Don’t hold him back from enjoying whatever improved quality of life his PH treatments provide.

I asked how to parent around a life-threatening disease. Disciplining a sick child sounded dreadful. But the doctor suggested that we not change a thing. Despite not feeling well for a long time, our son seemed to be a happy little boy. His doctor felt there was no reason to change the way we were raising him.

Heeding this advice, we advocated for our son’s return to school and arranged get-togethers with his friends as often as possible. Health depending, he would play outside, ride his bike, go to a park, climb a tree, and even roughhouse with his brother.

I think not changing who we were as parents helped to provide stability when his health was causing chaos. We continued to enforce family rules such as going to bed on time, keeping his room clean, and not fighting with his brother. Some might be shocked to know that we would ground our sick child, but it was out of hope for his future that we did. He is now a happy, ambitious, and respected young adult, and I think he’s grateful that we always encouraged him to be his best self.

But I’m human. As I wrote in a previous column, I’ve made mistakes. There have been times during hospital stays, when out of frustration with me and his situation, my son has insisted I leave his room.

I remember the first time he did this. I felt emotionally wounded until a nurse, noticing my distress, comforted me with bold advice: “If it’s space he wants, give it to him and use it as an opportunity for me time.” I reluctantly followed her suggestion and went to the cafeteria to enjoy a hot cup of coffee and make a phone call to a friend. Other times I’ve read a book, taken a walk outside, or visited with another parent.

When I return, my son is usually in a much better mood and so am I. There is nothing wrong with a caregiver and patient giving each other time to themselves.

Cliché advice that expectant mothers often hear is, “Sleep when the baby sleeps.” It has taken several night nurses to convince me that this is also sound advice when my son is in the hospital. Staring at the monitors and listening to the beeps instead of sleeping is never good for my mental health. It depletes the energy I need to help my son through the next day.

“Sleep when the patient sleeps” is valid advice. Sleep deprivation can snowball and make emotional situations worse.

No one ever gave me, the mother of a sick child in the hospital, grooming advice. My suggestion as a fellow caregiver: Shower if there is time, or at least take 10 to 15 minutes each morning to brush your hair and teeth. Put on some fresh and comfortable clothes, maybe even a little makeup.

People will understand if you look ragged and run down, but it’s not an expectation. Sleep is important, but so is how I start my day. A brief morning routine revives me and sends a message that I have not given up, and neither should my son.

Sort through my advice and that of others. Create your own piles, and consider the words of Bruce Lee: “Adapt what is useful, reject what is useless, and add what is specifically your own.”

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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.

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4 comments

  1. MamaBear007 says:

    I love your advice that gives parents and caregivers permission to take care of their own needs. I often tell other carers and parents of CTEPH patients that they can’t take care of their loved one if they don’t take care of themselves — they just won’t have anything to give.

    • Colleen Steele says:

      It’s so true! It’s a lesson that many parents and caregivers eventually learn the hard way – myself included! I really appreciate that you read my columns and comment. Thank you!

  2. Shannon says:

    I enjoyed reading this! I have had to ask my parents to leave my room a few times. And it made my Father so angry. It caused a major uncomfortable scene. (In front of my team of doctors) I told
    My Mother to never come to the hospital again to see me. She does nothing but cry and says she’s bored. I just can’t handle all that when I am sick. I was never trying to be disrespectful towards them but I am 43. I don’t need anyone to speak for me. I have not spoken to either of them since my last hospital stay and I don’t want to. My parents are old school and I guess they just don’t understand because they are both very healthy.

    • Colleen Steele says:

      Shannon, as an adult you definitely have the right to speak for yourself and be given privacy whenever you need it. My son was a minor when he asked me to leave for a while. He needed time to think and come to terms with things himself. No matter the age of a patient, everyone deserves some quiet time. He was overwhelmed by lack of control in his life. Giving him time to himself gave him back some control.

      I can understand how your mom’s tears and expressed boredom would be an unwanted distraction for you. Maybe for future hospital admissions you can arrange a visiting schedule? You might be 43 but in their minds you are still their child. I’m sure they care a great deal about you but it sounds like ground rules really need to be made. I know it’s easier said than done but I hope you can come to an agreement.

      Thank you for commenting. Maybe this would be a good read for your parents too?

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