The Hospital
![Self Care: Finding help in the hospital](https://i.ytimg.com/vi/McqsKNsP28c/sddefault.jpg)
Self Care: Finding help in the hospital
A bereaved mom and parent advocate and a pediatric hospital chaplain provide tips for taking care of yourself in the hospital.
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Microaggressions: “We need more [BIPOC] representation in the NICU.”
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Expressing emotion in front of the medical team, as a Black parent
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NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
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There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.
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A dad reflects on living in the hospital. We just lived hour to hour.
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In the hospital: I felt like nothing really made me feel better.
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Her medical team knows what we’ve been through and gets it. They become like friends and family.
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From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
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I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.
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“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
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My grief was exacerbated by the trauma of being in the hospital in a really intense setting.
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Getting out and walking was a saving grace.
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My Present-Self message to my Past-Self: “You are doing a good job. You can take a rest.”
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Cardiomyopathy: A mom on arriving on the cardiac floor and finding community.
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A New Diagnosis: Finding Your Bearings
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The hospital is like a foreign land
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It’s hard to know which doctor is in charge.
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Parents get exhausted by the steady stream of specialists in the room.
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It’s exhausting to sort out all the different perspectives from specialists. Parents can ASK FOR HELP.
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Getting Clarity—Parents can say, “This is what I’m worried about. Should I be?”
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Hospital teams don’t want families to be confused.
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If a parent feels angry or upset, ask for help.
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All the people who helped me when we were in the hospital with Jack.
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There will be communication challenges. If you’re wondering, just Ask.
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Providers can behave differently on different days. But they always care.
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The Flow of the Day: Caregivers Change Shifts
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Self-Care: Providers will encourage parents to get sleep and get some air.
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Self Care: Finding help in the hospital
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Parents feel pressure to be “liked” by their child’s medical team, but need to feel comfortable expressing their concerns.
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For Providers—Self care is important for providers too!
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For Providers—Ask families about their life OUTSIDE of the hospital, to better understand their big picture.
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For Providers—Families can be quite different depending on when you see them.
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For Providers—Acknowledging feelings of failure. Encouragement to honor the care you and others have provided.
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Should the Providers go to the Funeral?
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For Providers—Child death impacts us and takes a toll.
Can we help you:
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