10 Comments
Feb 18, 2022Liked by Jane Swift

Thank you, Jane, for sharing this.

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Feb 18, 2022Liked by Jane Swift

During the last 4 days of my husband’s life 2 yrs ago the nurses and doctors told me he was very sick but I knew that. My daughter was out of state and I kept asking if I should bring her home. The night before he died I asked the doctor if he was “ever leaving the hospital” and he replied “we are doing everything so he can”. I woke up in the middle of the night and called the floor to check on him and after a lengthy hold a doctor I didn’t know came on the phone and said she hoped to keep him alive til noon that day. I was stunned that I had no idea from his regular team this was a possibility. I had to call my daughter to quickly get her home in time, which she did. But the conversation never happened with me that this was a possibility. I now know death is a failure in their eyes but to those of us who have no experience in these matters we are caught off guard. I’m not trying to be critical of his care but wished we could have had these conversations. I am still haunted by the panic I felt thinking I should have had my kids there sooner

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Feb 19, 2022Liked by Jane Swift

My Mom died last August. I feel your grief deeply and am moved to tears with each of your posts. Thank you for sharing your thoughts and your story.

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Feb 18, 2022Liked by Jane Swift

Thanks for sharing this story. End of life is complicated enough without having to navigate the health care system. Both of my parents died "in hospice care"...My mom at home with us dispensing the comfort meds, and my dad in the hospital as by that point he lived in a nursing home. Hospice, while emotionally fraught in some ways for me, is such a blessing in that the patient and their families can decide when it is time to go peacefully hopefully surrounded by those you love and who love you.

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Feb 18, 2022Liked by Jane Swift

Jane, thank you for sharing this. Much of what you write hits home immediately and brings up thoughts and emotions of the experience with both of my parents - a dad who died when I was a senior in college with four younger siblings and a mom who died after fighting the tough fight for years and also never saw the hospice nurse. Your strength in working through your experience is amazing.

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As one of the priests who reads your work, I'd like to know the adjective you might have written should another priest and I not read it!! Seriously, I can relate to your feelings. Two points: First, as I journeyed through end of life care for both of my parents in the last five years, I learned early on that I needed to advocate (sometimes strongly) for them in all kinds of ways. From insurance to docs to hospitals to nursing homes. I was there every step of the way. It was clear to me that should I not be there, they would languish. At times, it was very difficult. But the aforementioned institutions all knew I was watching and was right there. Now, I encountered some wonderful healthcare providers along the way and kudos to them all. The problem that I saw was an overwhelmed system with no where near the amount of staff that they needed. Mostly everyone responded well to my interventions. I was at every meeting and was part of every conversation for both of my parents. Second point: end of life decisions are not black and white. Yes, my parents had living wills and the like, but today's end of life decisions are complicated at their best. To add to that, I wasn't allowed into my mother's room until we put her on comfort care (COVID issues), so I had to make a decision about her on the phone with her doc, who was wonderful and gave me a lot of time. But he needed to know right then. It was yay or nay. I feel I made the right decision, and am at peace with it. But the situation was complicated, and so weren't the results of any decision I was to make as her healthcare proxy. I would agree with you that end of life care needs an overhaul on how it's delivered.

I still want to know the adjective. Peace!

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author

Just saw this in the NYTIMES and it is an important counterpoint to my experience (and further reinforces as the author says, the need for better family communication - and I would add, nuanced policy debates).

https://www.nytimes.com/2022/02/06/opinion/intensive-care-patient-hospital.html?referringSource=articleShare

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Jane, I hung on every word of this post…caregiving for a parent is so different than for a spouse - esp at our ages, but the impact of doctors and the hospice/palliative system on both the patient and the family is so important. And, in my situation with my Dad, my brothers and I spend endless hours asking questions, navigating to get to the best care, all of which creates enormous stress and takes away from the caregiving task at hand….And I totally agree about in-home care when it can be figured out. Sending you continued hugs…

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