Would it be wrong to address a mistake made by hospice in the care of my mother or just let it go?

I am so sorry you lost your mom, and that your husband has dementia. I think there is nothing wrong with you saying something to hospice concerning this. Your heart is in the right place, and you don't want this happening to someone else. You can thank them for all of their hard work and efforts, and share concerns so that they can learn and grow.

When my dad was under hospice care, his nurse dropped the ball at some point and I was livid. L I V I D. I called over to the supervisor and told her I did not want this nurse back to see my dad ever again because of what she had done or not done, as it were. One of the CNAs heard me on the phone and said something to the effect that "I wouldn't want to get on your bad side", or something equally as snide. My reply? "Yeah but you would sure like to have me on your side if you were on hospice, or in the hospital, or in need of an ADVOCATE, huh?" You do not want to get in the way of a daughter fighting for her father's rights, that much is certain.

Anyway, I think you are well within your rights to speak to the hospice people and let them know how you feel. How can services be improved without feedback from families? It can't.

My condolences over the loss of your mom and the hard job you have of caring for a husband with dementia and an elderly dad to boot. Sometimes it's all too much, isn't it? It would be nice to run off to Hawaii without a phone to relax for about a month. If only.

Oh, please DO speak to them. As you know, this is something we on the forum always are harping about.
It isn't OK that it was missed, but you with your compassionate mind and you direct gentle delivery are the PERFECT person to bring forward to them what happened. Speak to someone high up in the hospice. The needs to be part of the training and remediation going forward for them.
Please do bring it up. I am sorry for your loss and I admire you spirit and gentleness. It is what true strength looks like.

It could very well be that missing the UTI could have started the decline. If you say nothing, it will probably bother you forever. So say something. However, I will say that while hospice is trained to observe for UTI, since they don’t really know the patients as well as family members, expecting them to detect UTI based on personality changes In a patient they see perhaps twice a week seems unreasonable. Your father chose to say nothing and you did not call. So a perfect storm. Did it help end her life? Yes, probably. Maybe a better way would be to talk with social worker or grief counselor provided by the hospice to go thru the whole process. You have a lot on your plate. Your mother’s passing was traumatic for you as well as for her. Hospice has people for you to talk to. Not to blame them. All everyone can do is the best they can and still things happen.

Dear "graygrammie,"

First off, I want to say I'm so sorry for the loss of your mom in a way that you and your family not only wouldn't have wanted but, didn't expect.

I understand your feelings on so many levels. We had hospice care for my dad when he was dying of Pancreatic Cancer back in 2004 and was very grateful for what they did for him and our family. Also, we have hospice care for my mom in her new facility in the memory care wing because she nearly died in her previous AL facility. She had been perfectly mobile and able to dress herself. Not anymore - she lost 20 lbs., can't walk on her own or dress herself. I felt exactly the same way when she qualified for hospice - I'd have that extra set of "eyes" with the nurse coming weekly and the bathing aides coming twice a week.

Yes, UTI's are extremely common - yes, your dad felt it wasn't his place to "tell them" and yes, we could beat ourselves up for not at least "suggesting" it. However, hospice workers aren't superhumans and can make mistakes or miss something especially in light of these extraordinary times with COVID-19.

When my mom nearly died from severe dehydration in her previous facility and I was not made aware of it, I was furious. I found out through a mobile doctor's nurse when she told me she had COVID which the facility had not told me yet either. I immediately called the facility and told them to get an ambulance right away and have her taken to ER. The receptionist told me she would be better off staying put and was trying to calm me down meanwhile the clock was ticking away. The facility had been all over our local news because of the high amount of cases and subsequently a high amount of deaths - she was more concerned about the media catching wind of it than my mom's life. One news station was setting up his camera when my husband and I arrived. I just wanted to be in the vicinity and follow the ambulance to the hospital around the corner. We never did see them - the facility arranged to have the ambulance go behind the building to avoid more media attention. Five days prior, someone from the facility called and said she was weak and they were trying to get her into bed. My husband had to "tell" them to offer her one of the protein shakes I bring her. Neither one of us could figure out why "we" had to tell them something so obvious - so I get that too.

I could not let the feelings go. I was determined to talk to the Regional Director who is in another state but, I waited three months to do so. I needed to be sure we had a new facility lined up and wouldn't have to send my mom back there and then I waited until they would allow a moving company to remove all of her belongings. As soon as that happened, I sent an email to the Director and cc'd the Administrator of the facility itself - I wanted everything in writing first. The problem was going to be whether they were going to demand a May payment even though my mom hadn't lived there since going to the hospital in mid-April. Five days later, I received a reply but only from the out-of-state Director asking if I would talk to her over the phone. I agreed to and we talked for an hour about the whole thing. I "had" to do this on my mom's behalf! I didn't want them to think they got away with what they did. Just like you thought hospice should have recognized a UTI, I thought the facility's nursing staff should have recognized my mom being severely dehydrated!

In my email and conversation I was very firm and told them exactly how I felt and asked questions that I wanted answers to. Two of my main points was that the receptionist had no business telling me - my mom's daughter/P.O.A. what I should do with my mom and asked why no one recognized that my mom was severely dehydrated.

I think you would feel better getting it off your chest. You and your family will be in my thoughts and prayers during this very difficult time especially as you take care of both your husband with dementia and your dad.

I definitely think you should give that feedback. This should be a part of their training protocol.

This thing is they likely are trained to recognize a UTI, but although many are alert to the possibility others are not. I too wanted to point out every way I felt we had been failed at the end of my mother's life but in the end I did not - I had a nurse in my mother's nursing home repeatedly insist that she couldn't have pneumonia because she didn't have a fever although my on line research from multiple reputable web sites told me that the very elderly with aspiration pneumonia often do not. The thing is I doubt the outcome would have been any different if her pneumonia had been diagnosed several weeks earlier, even if she had recovered another round was inevitable at that point in her life.

GrayGrammie, I think you are well within your rights to contact the director of this hospice organization and talk to her/him about the way in which mom's hospice medical team "dropped the ball".

Anecdotally, alot of medical professional disregard the whole "UTIs cause psych symptoms". There are lots of docs and nurses out there who will point to studies that seem to indicate that a great many elderly folks always test positive for UTIs and this does not change their behavior.

So you might get pushback; nonetheless, it seems like ONE of the things that should be checked out when there is a sudden change in mental status.

I am sure they would want the feedback. I would talk to the nurse assigned to her or to the supervisor.
I would do this by letter rather than phone. You can thank them for the care and attention but that you feel that the UTI was missed and a faster diagnosis may have made a difference during the last few weeks.

I am so sorry about your mom’s passing. If you feel that you need to get this off your chest, then send a letter to the hospice administrator.