Mom was under the care of hospice at home since June 2019 but died in a nursing home July 12. For the most part, I was happy to have hospice coming in to see Mom. I am five hours away with a husband diagnosed with dementia and Dad is 89. Having a nurse in once a week and an aide three days a week was a good way to have another set of eyes on Mom since I couldn't be there.
When Mom's behavior suddenly changed (aggressive, doing strange things), my first thought was UTI because of the experience of friends with their parents, but hospice did not pick up on this. I asked Dad to ask for a culture but he felt that it wasn't his place to tell the hospice nurse what to do. (In retrospect, I should have called and requested it, but "would've should've could've" isn't a helpful place for my mind to be at this point, just chalking it up to another lesson learned the hard way.)
Three weeks passed before an ER visit resulted in a positive UTI culture. And due to too many people and facilities involved in her care (which was out of Dad's hands at that point), the UTI was not treated with a full course of antibiotic. The last month of Mom's life was spent in a mental health facility, a hospital, and finally a nursing home for the last ten days. This was not the way we expected to see Mom's life end.
I want to thank the hospice team for the year of care they provided. But I also want to suggest that they train their nurses to recognize a UTI when it presents emotionally, verbally, cognitiviely, etc. in an elderly person without any physical symptoms. Would it be okay for me to do this or am I out of line?