This is such a heartbreaking and frustrating situation.

I've read that the worst kind of stress is when we feel we don't have control over the situation, which is what you were feeling. There are so many things that come to mind Janice, but when I go to write them they all sound trite and placating and not what I mean. Time and again, when I read your articles, I think about how it seems you did the very best you could in a super stressful, bad situation. It would have been a massive challenge any time but many times worse with Covid.

Thank you for sharing your story to elevate our attention to what is important. I am dealing with this exact thing with my Mom right now and your information has given me the courage to ask deeper questions. I want you to know it's making a difference.

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Janice, your story is heartbreaking and mirrors our experience of having my father enter a nursing after rehab staff decided that he could no longer make any progress. He was mostly well-cared for and the home’s staff said they enjoyed spending time with him.

And then there was hospice care, provided by the hospital system that managed the nursing home. Dad was in hospice less than a month before he died. Hospice said they’d visit every day, especially as he got closer to death. I was expecting hospice to provide more support for the family than they did. They never let us know when they were going to visit my father. The weekend before my father died, the hospice nurse took a long weekend and no one took over for her.

My father died in the wee hours of the morning on August 9. To date, we have not heard anything from the hospice organization.

I probably should have called more and reached out to the social worker and chaplain more, but I didn’t know how to talk to them. It was awkward the one time I met them in person and it would be even more awkward on the phone, which apparently how they preferred to communicate. “If you need anything, just call the hospice number and we’ll get back to you.”

I was expecting a more personal and closer relationship.

Thanks for sharing your experiences.

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Gosh, my heart goes out to you, Janice, and to your family - and of course Dan in his time. There's such immense experience and knowledge that you disseminate in your posts and I am grateful, should I or my family need such advice. Thank you.

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The whole situation from start to finish was a complete nightmare, and none of it your fault. None of it Dan's fault. How many thousands of families go through the trauma of this terrible disease every year.? Such a sad thing. You have taken the experience and done something amazing with it, Janice - sharing everything you learned in order to help others avoid as many mistakes as possible. You are a gift.

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Heartbreaking. My husband and I talk about this scenario if either of us has dementia. Both of his parents did and we saw first-hand how it is in the facilities. We are dealing with this with our elderly parents, but I honestly can't imagine and don't want to try when it is the love of my life. I am so sorry for your loss and what you have gone through.

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It was a sad and crazy time. I don’t think anyone was fully equipped to handle the changes and unknown dangers the pandemic brought. And yet, I keep hearing stories of care home residents contracting Covid from workers who were careless. And there is no excuse for them not contacting you when Dan went to the hospital. Thank you for continuing to share bits of your’s and Dan’s story at the end.

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