Hi, Ms. Colleen - thank you for responding to my post.
I do t think the nurses spent enough time with my daughter to make their conclusions.
Yes, my daughter can speak, in a limited capacity. She can read, also. She and I communicate daily by text, or she’ll send me a voice recording in which she will carefully say what she needs, like “can I have Kleenex”.
Then I’ll know to make a door-dash order for her for tissues, CeraVe anti-itch lotion, or even food sometimes.
I only wanted more specific attention to her needs because she wouldn’t be “suffering” if they would provide more care.
I live six hours away from her SNF and fly down there every 3 weeks. I think I need to find a palliative care service that doesn’t automatically jump to “hospice conclusions”.
Even speaking to her SNF nurse today, she said my daughter was doing well. She was as confused as I was about the hospice orders she saw. We aren’t even officially accepted yet by AYA Hospice. I’m going to revoke the paperwork I signed for the palliative care. It’s not feeling right.