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I am a 42 year old woman living in a skilled nursing facility. At 36 I got meningitis and had a spinal stroke which left me a quadriplegic. All of my friends and family visited in the beginning but it's slowly trickled off. At this point it's just me left here to endure this on my own. It feels like every day is a fight. I don't get taken care of properly and I've tried every avenue to find help for myself. I've talked to administrators Directors State representatives and even made complaints to DCF and the agency for healthcare administration. I have trouble seeing doctors and getting things as simple as a UTI treated. I don't get bathed they won't help me get into my chair and I've even been bullied by that. Most of the staff members don't care about the resident. It's just a job to them and if they quit or get fired there are plenty more out there. I'm really glad that I found your podcast because people need to know what's going on in places like this. Shining a light on it is the only way that maybe someday, probably actor I'm dead and gone, things could get better. This is a very lonely place to be in most of the people here don't have family. So that means no visitors no special days no going into the community. You forget what it's like after a while. The colors smells the simple conversation with strangers. All of that gets forgotten and you just try to get to the point where you can make it through each day. I'm still fairly young and fairly healthy so I could still have another 25 years like this. But I won't allow that to happen I will find a way to end it long before that. I hope that you keep investigating and talking about what this life is like because people cannot understand unless they come here or have family that comes here. We are the rejects of the world. There are no advocates marching for us or raising money for us we are just simply left here till the end of our days trust me when I say this is a very sad existence.
Pray for us
—hopeless
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Thank you so much to SuChin and her guests for such heartfelt and real conversations about the nitty gritty of caregiving, especially the emotional and financial toll. I’ve only been a caregiver for less than a year, but it was a sudden shift in responsibility that utterly took over my life at the beginning and I wasn’t at all prepared. Hearing about how these empathic, loving guests deal with the range of emotions and practical details alongside their own personal lives is such a welcome respite.
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There is good content in this podcast analyzing other healthcare systems with better outcomes than the US healthcare system. The problem is the advocacy against “interventions,” when c sections and blood transfusions may be needed to save lives. There isn’t a focus on nuance and information, which is necessary for the creation of high quality medical journalism. And yes, NEVER using the word “women” and only using the term “birthing person” is quite jarring. Both terms can be used, neither is incorrect. This ignores the fact that women are medically discriminated against, and removes the ability to analyze healthcare truthfully.
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This show is so comforting. Caregiving can be lonely. But these stories are a good reminder
I’m not in it alone. I would follow SuChin to the ends of the Earth. This show is so good and so well made. More episodes please!!!
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