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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?

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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.
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NobodyGetsIt Aug 7, 2020
Well said!
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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.
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NobodyGetsIt Aug 7, 2020
"lealonnie1" - when I read your reply "Yeah but you would sure like to have me on your side if you were on hospice..." boy do I wish I had the ability to think that quick on my feet! Last November when I found a full-medication cup lying around in my 94 year old mother's bedroom who has Alzheimer's, I told my mom to wait for me in her room and went to the first med tech I saw, showed her the full cup and looked the med tech right in the eye and said "you're supposed to be watching her take them...she said she'd take care of it." One week later I found another one and searched her whole apartment and found three more. I took a picture, went to the Administrator's fill-in and said "this happened last week and I was told it would be taken care, this can't continue - this is a huge liability if my mom were to take them all at once." That's when I called the Regional Director who's in another state. She took care of it immediately but, suggested I talk to the facility's Administrator when she got back from vacation. And that I did - I sat in her office and said "one day, you are going to be in my position with a loved one in need of care and you will have to be their advocate OR you, yourself will need someone to be an advocate fighting on your behalf." No response - one month later COVID strikes.

I'm a firm believer in "you reap what you sow" - or their "comeuppance, just deserts (some spell it desserts), karma..." - I think she got just that!
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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.
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Dianed58 Aug 9, 2020
Do bring it up along w the thank you. Not only your peace of mind but also will help to educate agency and maybe save another family from this experience.
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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.
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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.
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NobodyGetsIt Aug 7, 2020
I forgot to mention, that the hospice organization we're using actually has a "patient advocate" which is a different person than their social worker they've assigned to us. I have spoken to her when I had a couple of issues concerning staff involved in my mom's care. I didn't know they had such a thing until one day she called me and wanted to know if I had any questions or concerns.
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I definitely think you should give that feedback. This should be a part of their training protocol.
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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.
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Mysteryshopper Aug 9, 2020
Thank you for bringing this up and I agree with you. I really don't think that fever is a reliable screening tool in general. Many moons ago on my 3rd trip to the hospital for the same thing, I was again told "You can't have _____ because you don't have a fever." Believe it or not, I went through two surgeries, two inpatient stays, and two different hospitals over 19 months to eventually find out I was RIGHT all along. Never once had a fever.
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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.
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disgustedtoo Aug 9, 2020
It doesn't always show up as behavioral symptoms (i.e. acting aggressive, etc.) When I first joined this forum, I was skeptical of the whole UTI thing until it happened to mom. She was notorious for having UTIs when still on her own, but she would know and address it. The first one she had while living in MC resulted in severe sun-downing - insisting she had to get out, had to go home, she had guests coming, setting off all the door alarms, etc. They called me (it was a Fri night of course!) and wanted me to come take care of this... Really? Do what? I'd never had to deal with this! By the time I could get there, they finally got her into her room with a magazine, so I did nothing. I wouldn't go in to disturb her at that point. Of course every afternoon/evening was a repeat until we could get a test on Monday (she had an appt already) and start treatment, including an anti-anxiety to ward off the sun-downing until the UTI was treated.

Since then she has had at least 2 more UTIs, however these presented as night time bed wetting. Despite wearing disposables with a pad inserted, she would soak herself and the bed. No symptoms otherwise.

It isn't always just elders either. When I was around 40yo, the day after my regular physical they called and said they sent in an Rx for a UTI. Really? I had ZERO symptoms! I have had a few episodes with pain on urination, but not many. That time was a complete surprise to me!
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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.
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Mysteryshopper Aug 9, 2020
I agree with making the contact by letter. But, I think she should request a reply. Should be a no-brainer that someone from the facility (or administration) should respond to something like this, but.... I feel like I've seen everything at this point. OP will be that much more hurt and upset if she feels her letter was ignored - even though multiple people may have read it by that time.
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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.
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