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Caregiver and author of 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving'. Blogger, speaker, consultant and advocacy trainer.
Paul asked, "what about people looking after loved ones at home who are really suffering under the burden of care? But I would ask family caregivers to think about what they do for their loved one that others (including paid professionals) cannot do. Because often, there is a common misconception that medical professionals can care 'better' (so we should just organize respite) or if we are very tired, it's because we haven't practiced self-care properly." Then Paul asked if it's ever possible for paid caregivers or medical professionals to demonstrate natural caring.
BUT this is a LIVING list and that means we would love for you to add your truths here in the comments. 2) If I happen to get a real rest and are lulled into relaxing, it's hard to come back into hyper-vigilant mode. The worst is when a NEW symptom crops up - something I've never seen before (and I always think of that Dorothy Parker line, "What new, fresh hell is this? "). Now, add your essential truths in the comments section!
By necessity, caregivers are creating new and dynamic connections beyond family, friends, and work colleagues for support. Caregivers are drawing on their vast and deep health care experiences to advise on patient safety and health improvement by sitting on hospital advisory boards, patient engagement committees, and in community wellness non-profit entities. Their experience of navigating health systems from home to hospital and back again makes them invaluable partners in everything from identifying research questions to communicating scientific breakthroughs to patient and family communities. Caregivers don’t have the luxury of choosing only to communicate online or face-to-face; they must create ongoing opportunities to engage others for support, information and reciprocity across platforms depending on their needs.
In the ICU waiting room, there are greeters who man the communications with the nursing station. They guide grieving families to quiet rooms and make cups of tea for tired loved ones who may have come straight from the airport to be close to someone who is seriously ill. They smile and they all have something I will call the gift of compassionate conversation. They do not intrude, but if you make eye contact, they will come over, sit down and ask how you are.