This is a crazy situation. Help!!! My mother went into the hospital 2 mths ago with delirium and confusion and basically went from self care to full care from a Friday to a Monday.

This is really heartbreaking. I am so sorry for your entire family.

Did the UTI lead to sepsis? I guess there are a lot of medical questions that come to mind, but the focus now needs to be on her care.

Hospice will provide a hospital bed, a bedside commode, medications to keep her comfortable (and you control what she gets, when), and any supplies she needs.

Yes, someone on hospice needs 24 hour care. My husband slept 20+ hours a day on hospice, so the actual hands-on care was limited, but someone had to be there all day every day. My husband also had to be repositioned regularly to prevent bedsores. Is she returning to her own home, or the home of a family member? Can several family members rotate being with her? It may be 7 - 10 days, but that is very uncertain.

"Don't feed her unless she asks," is pretty standard advice from hospice. As the body shuts down it loses its ability to process food. My husband ate a little during the five weeks he was on hospice. In the hours he was awake he was more lucid than he had been in a while, and could make his wishes known. He ate a lot of Popsicles. One morning he asked for his favorite breakfast. That was scrambled eggs with salsa and nacho cheese. Oh dear. I didn't have any salsa in the fridge. I used seafood cocktail sauce instead. The only relationship it has to salsa is that it is red. My husband ate the whole thing and told me it was wonderful. I think the experience of eating just then was what was wonderful. Taste really didn't matter. He read the newspaper and went to sleep. He died that night.

When my mother was discharged from the hospital to return to her NH, the hospital said she may not live the rest of the week. She was on hospice 3 months and then discharged to regular care. She lived 2 more years. I don't mean to give you false hope. I don't know how often that happens.

Hospice generally stops most medications. I hope they will continue treating the UTI. Insist on that! It is for her comfort, and that is what hospice is all about.

Again, sincere warm thoughts for your entire family. Come back and post as things progress, if that would be of comfort or help to you.

Another things about hospice -- at least here -- is they cut red tape. My husband was on palliative care before hospice and he was supposed to get a hospital bed. This process went on for more than a week, and still no bed. Hospice came to the house, interviewed me, explained the program, I signed the paper at 3 in the afternoon and the hospital bed was delivered by 7 that evening. Anything we needed in the five weeks in that program was brought to us the same day. Once when the nurse arrived Hubby was in pain. She thought he might need a catheter. She went to her car and brought in a sterile kit and relieved his pain immediately. And bless his heart, he was lucid enough to thank her profusely.

You don't need professional caregivers if there are enough family members or friends to be there around the clock.

For my mother, hospice got her a special bed immediately and as soon as she could be transferred out of bed they provided a geri wheelchair. I imagine the NH would have done these things eventually, after getting a doctor's order, and going through insurance, blah, blah. blah. But hospice has authority to cut all that red tape!

Once hospice takes over the only phone number you'll need to have handy is theirs.

I just want to ease your anxiety about what will happen on hospice.

I’m so sorry you’re going through this. And it sure sounds like somebody missed something. Was the UTI cleared up? I don’t recall ever hearing someone needing rehab after a UTI. Was she on an IV in rehab to prevent dehydration? If they cleared up the UTI and are now discharging her to home, why does she need hospice and 24/7 care? Did something else go wrong with her health while she was in the hospital or rehab? Did she have a pre-existing condition that flared up due to the UTI?

Contacting the hospital or rehab where she was probably won’t do any good. You really should call her doctor ASAP to find out what’s going on. If you aren’t being given time to prepare for all this, I might be tempted to take her back to the ER. It takes time for caregivers to be hired, Hospice care to be set up, equipment to be ordered, etc. please keep us updated!

Don't get me wrong I always enjoy hearing people praise hospice. I love them and will use them when my mom is ready. My issue was she went in for an infection and dehydration. she was choking on phlegm when they were putting her in a room and so the nurse put a temp npo on her until the doctor came in. It was never questioned and the doctor never released her from the npo. when i asked about the npo they said patients with dementia sometimes forget to swallow and will breathe in and choke on their food. The day nurse told me she has been unconsious for 36 hours. but what she didn't know is my mom will sleep all day and evening but will be up most of the night which is why they rarely saw us. we would go up to visit her when she was awake between 10pm and 6am. My mom has dementia which we understand she will need hospice and they will come, but according to her second opinion dr.. not right now.

It's hard for people who don't know your mom to get a true feeling about where she is at medically. The doctors and nurses in an acute care hospital tend to see anybody over 75 as someone at the end of life, regardless of how well they were previously. We on the forum have even less to go on, she sounds seriously ill and nobody wants to give you false hope. I will say though that I know of several people who were "at death's door" who recovered, and I have also read of may here on this forum whose loved ones "graduated" from hospice after improving. I think you need to keep an open mind, anything is possible. Hope for the best and prepare for the worst.

something definitely seems to be missing here. While your mom may not be awake during the day it still might be wise to go in during regular hours when her care team is around and talk to them. Does she have a primary, doctors that she has been seeing for a while that know her and you? Seems like a conversation with the medical professionals involved with her care and making these decisions should be happening and if they are't asking for that and making it happen one way or another then you need to. You or some family representative should have a much better idea of why she so suddenly went down hill, what her issues are and why she needs Hospice all of a sudden.

Ynot
I apologize if you've posted an update elsewhere on A/C but hope you've found some relief for mom

My 94 year old mom is same situation - admitted with UTI on November 2 discharged 4 days later to SNF with IV antibiotic for 2 weeks

She's experiencing delirium then sleeping 24 hours without intake - I did get iv fluids started but she's not eating much and after only a few days in SNF is developing bedsores