9 Comments
Apr 28Liked by Denise Brown

Zero tolerance, indeed. Thank you for your work in helping them see just how frustrated and terrified we are in dealing with systems that have 'zero tolerance' while often failing to see us and our needs. It is a hot mess during caregiving.

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I'm struck by how little options we have now for managing the impact of caregiving. Everything seems to be a battle and even the legal documents, like a Durable Power of Attorney, that should clear up the mud now can seem to add even greater complications. A discharge planner shared a story about helping a 96-year-old patient whose POA (a daughter) is paralyzed about making good decisions to honor the mom's end-of-life. The mom now has a feeding tube (which is just an awful experience at end of life, adding so much pain and discomfort) and is without a discharge planning for hospice care, even though the mom wants hospice care. The second sister, who also wants hospice care, just defaults to the sister with the POA. It really, truly is a mess.

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Apr 28Liked by Denise Brown

It really is a hot mess all around. I know people who have had to fight to get Palliative and Hospice care against (non-medical) hospital authorities.

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I had to fight to get those services for my parents with their physician. My blood pressure goes up just thinking about that! It also just really makes me to cry. 😢

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I'm so sorry, Denise. It's just not OK. 💔

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Thanks for bringing all this to light. As both a caregiver and a retired healthcare provider I know that the pressures are real on all parties. Until we have government funded healthcare this will continue. I give thanks every day that my 98-year-old Mom has not needed extensive medical intervention. I’m also fortunate that the providers she does have value my input and appreciate my role in her life.

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THIS: 'I think about family caregivers living in this hot mess of uncaring systems, aggressive family members and intolerable conditions. We’re at our breaking points but can’t break. If we break, so does our caree.

So we live the hot mess day in and day out.'

So true, Denise! This is what I read on the forums in the UK, EVERYDAY' I'm blessed that right now, our days are easier. Boring and routine are heavenly.

When we were caring for Dad, we were well beyond breaking point - hypervigilance, eggshell-tension, months were one long day lit by the blue lights of ambulances and red lights of heart machines.

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Wow. Those days with blue and red lights are really just awful. Thank you for all you, Victoria, on both the boring, routine days and the eggshell-tension days. Your presence and care matter so much on every day.

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Thanks, Denise. Yes, I know you know. Dad passed in early January 2020, a release for him and us. 16 days after the funeral, I took Mum for cancer surgery. Every caregiver has a unique rollercoaster. take care.

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