Would it be wrong to address a mistake made by hospice in the care of my mother or just let it go?
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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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.
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!
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.
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.
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!
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.
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.
As your experience overall was positive, perhaps the best approach would be to write a summary of compliments and criticisms together. Keep it factual and don't apportion blame to individuals.
The learning point for all caregivers reading is: if in doubt, *ask*. If any health care professional takes offence at a patient's or relative's asking "would it be a good idea to check x, y or z?" then that professional is in the wrong job.
But, none of this will bring your mother back, so anger should just be set aside and just inform them that maybe more supervision of the caregiver from hospice, or checklist for caregiver from hospice or keep a daily log of when medication is delivered to the patient. Mom is gone, can't bring her back, but fixing a problem for others would be good gesture. I'm a firm believer that when our candle is down to a sliver of a wick and no more wax to burn, it is our time and no one of us can change that. I am also a firm believer that when our time is up, it doesn't matter circumstances, time is up.
Why do I feel this way? My sister was injured at birth and all the doctors could not find out what was really wrong with her, besides being hit on the head with a forcep by a young intern on his first delivery. Mom's doctor was on vacation, thus the intern. My sister never learned to talk, laugh, go to school; she was in institution her life of 33 years as Mom couldn't take care of her at home with 2 more children. Next, a healthy man of age 34 didn't feel well so this man grabbed his heavy tool box and walked down 8 flights of temporary stairs of a building being erected, to go home to his wife and 4 children; on his way down the stairs, he stumbled and had a heart attack. Died instantly. That man was my Dad. Another example of fate: my mother had kidney stones at age 25 or so, her doctor put her in the hospital, they kept her 5 weeks, with no money coming in to pay for her stay! I don't know all the issues at the hospital as I was 7 yrs old. She ended up in a coma and for 2 weeks showed no signs of life. Finally they told my Dad to take her out, call a funeral home and get her body out of the hospital, they needed the bed. My dad fought with the nuns, the hospital administrator, the doctor and nurses, No he wasn't taking my Mom out, she was alive. They persisted, get her out of here. My father asked for some time with her, almost an hour, he talked with her, knowing she may already be dead. He held her hand. She pressed her finger into his hand, so much that he ran from the room and got the nun to come and see for herself. She felt Mom's touch and immediately called the doctor .My mother said she heard all the counts of my Dad calling a funeral home, get her out of the hospital, and said she had to let Dad know she was alive. My mother lived to be 78, a widow for more than 40 years. When your time is up, it's up. Try to make it better for the next person in hospice by telling them about the UTI, and hope they can be sure something like this doesn't happen to another person.
And, also, was father mentally capable of understanding the importance of getting hospice to check it out and act on the necsessity of this test and resultant medication.
I am so sorry this happened to your Mom. I wish the medical community who are not educated on dementia would get educated!
In your case, it does fall under the could'a should'a hindsight... We all have to be our own advocate, and even more so for those who can't advocate for oneself. Your dad was likely just being too polite, and not being a medical person might have felt it was overstepping his bounds.
I actually did this with a vet - I have to advocate for my cats. Given several issues found at exam, a T4 test (for hyperthyroid) would have been less invasive and certainly less expensive than bringing her back for the roving cardiologist! Turns out she WAS headed down that path (the hyper is like starting your car and while still in park or neutral running at full rev, which in the body can ruin the kidneys and heart, among other issues.) So what appeared to be early kidney disease was likely just the thyroid. It has been over 5 years since she was *likely* Dxed with CKD and is still going at 21.5+ Usually CKD doesn't last that long, esp in older cats. She has developed other issues (we did radioIodine treat the thyroid when medications didn't prevent weight loss), including lung "spots" found over 2 years ago and kitty dementia starting late last year! My EverReady bunny is still beating that drum!!!
Another cat was Dxed with hypercalcemia, which doc wanted to treat with Fosamax (one med used for osteoporosis.) When I was told I should take this, I researched it and NO WAY will I ever take that stuff! This particular cat was NOT going to be pilled, but even if I could, I wouldn't based on what I knew about this drug. I researched it and found that often those with no known cause (we tested all the possibilities) can be successfully treated by eliminating DRY food. I did that and cured the problem! Since then dry food has been eliminated for ALL the cats here (it resolved some other issues as well! worst stuff ever for cats!) But the lesson there was the vet learned something new - she was pleased that this worked and suggested other clients try this (they were doing the medication.)
you can't trust anything hospice nurses say--they just order supplies such as diapers and cleaning products, and hospice gets $4,000 a month for four visits a month, and a limited amount of nurse's aid help, which was of no use to me.
The family has to be aggressive and get them in the Emergency Room--but you have to call hospice first and let them know. If you leave it up to the nurses they will not do squat. It is too late for your mom--she died. Nobody in the family CALLED hospice and said "I'm taking her to the Emergency Room now," and if they said no then you can revoke the hospice immediate and let her regular Medicare pay for the visit. Most hospices would authorize the visit. And they provide TRANSPORT back home.
I cannot advise you what to do but your mom died, and that's that. No amount of complaining will bring her back, but also realize part of the problem is family who is not aggressive enough to get their loved one treated. Do Not Resuscitate does NOT mean do not treat. It simply means no chest compressions or intubation.
I took my mom to the emergency room at least a dozen times and I fired two other hospices --VITAS was the WORST hospice ever (it is for profit and believe me it shows). Mom died two years later still under hospice and in peace and she had no infection -- but I had to be there 24/7 and if anything I protected her from the nurses and doctors who were so determined to kill her.
Dad mentioned mom's sudden personality change in early June during our nightly phone call. I asked dad to ask the nurse to check for UTI but they didn't. It was hospice (not dad or me) that sent mom to the ER on both June 16 and June 18 because of her dangerous and violent behavior. Both times dad picked her up. The positive culture result was reported to dad on the 18th and mom was back in the ER that evening (before dad had been able to leave the house to get the prescription). Mom did get IV rocephin in the ER.
After I found out that dad had again picked up mom from the ER, that's when I came here to this forum and basically said, "What can we do to get her the care she needs?" I learned here that dad could refuse to pick her up and that then the hospital would have to decide within 48 hours what to do for mom.
Saturday, mom's behavior unmanageable, dad had to call a neighbor for help. She smeared feces all over the house and locked herself in the bathroom. Hospice had told dad that if at any time he was in danger, he should immediately call 911.
Father's Day morning, dad woke to find mom hovering over him with a butcher knife saying, "Everyone has to die, now is your time." He called 911. When the ER called for him to pick her up, based on what I learned here and the counsel of hospice, dad refused. The hospital (not dad, not me, not hospice) sent her to a mental health facility. There she had a choking episode (something that had not happened before) and ended up at the hospital ER (different hospital). She returned to the mental health facility only to choke again the next morning and was sent back to the hospital.
At this point, hospice worked with dad to find a nursing home that would take mom when the hospital released her. (We were unable to arrange round-the-clock care at home--we tried, the hospice social worker tried.) Before mom went to the mental health facility, she was eating, drinking, walking (with a walker when forced), talking (but with aphasia), dressing and bathing on her own. When she was released from the hospital to the nursing home, she was bedridden and noted as "nothing by mouth," uncommunicative, and diagnosed with vascular dementia.
We initially could not visit at the nursing home due to covid. We were in regular phone contact and they took the phone to mom when I called so she could hear me. She was once again eating, talking, and wheeling herself around in her wheelchair. Her 14-day isolation room was a big Florida room with windows where she could watch the birds and look at the flowers. We were talking about bringing mom back home.
On July 6 her lungs didn't sound good; they did an xray and found pneumonia. The next day when I called, the nurse said to me, "Miss Dolores is coming to the end of her life." I again asked about visiting and she said that yes, we should come asap. I drove four hours (with my husband with dementia) and my sister drove three hours (with a husband with cancer) to see mom. I was able to stay nearby Wednesday till Saturday and spent time with mom each day. It was the first time I had seen her since the lockdown started. I watched dad forgive her for trying to kill him and messing up the house. I knew my goodbye on Saturday was truly goodbye. On Sunday the nursing home called and said mom had just passed and dad was with her.
Your comment about DNR was totally irrelevant and uncalled for. We were as aggressive as we could be in light of the lockdown. My sister is a nurse with a doctorate.
You, as a daughter caring for her mom is a whole lot different than an 89yo man caring for his 89yo wife. I do not appreciate your condemning words.
Case in point - one particular time that I took my late mother to her retinologist I picked up on the fact that a staff member talked quite poorly to an elderly patient (not my mother). I immediately telephoned them and spoke to the office manager when I had arrived back at my mother's home. That person thanked me for letting them know that their staff member was less than professional.