My Mother who just turned 94 this week has had home hospice since the end of February. Need to decide if we need to change provider due to recent issues.I am the sole 24/7 caregiver now starting 4th year. I have my own home nearby but stay with my Mom. i am feeling very concerned about the hospice care and not sure what to do.Mom has not needed much til recently. Message is they want to provide support to family and make patient comfortable, pain free and have quality life. Seems like all they want to do is medicate with poor results.
Mom developed a uti a few weeks ago, I did an Azo test as her symptoms indicated a uti which she has had a lot of since breaking femor two years ago and having a catheter pre surgery. Hospice prescribed Bactrim. Didn’t resolve it, told them and they sent Cipro out.risks of it outweigh benefits and told them but no new med was sent and culture was not done. last week I tested her again and she still has behaviors etc, and was positive for uti. They sent Bactrim again. We are almost done with 7 day course and not sure if it’s working.She has been transferring fine til Tuesday. That day she was not feeling well and we asked hospice to have someone check her, concern was illness and unusual symptoms. She was too weak to transfer safely and we needed help. They said they would send someone but after a couple hours just said they were closing at 4:30, don’t help with transferring and won’t let us call comm paramedics unless she fell. Was trying to prevent that. Told us to call their on call line later if we needed anything and maybe they could send someone….Managed to get her safely in her chair thankfully but still worried that she was clearly ill and no help or concern from them about it.nurse was supposed to come the next day. Right before she was expected she canceled and said she’d come the next morning at 10:00 even though it was her day off. (We often have sub nurses sent). She came closer to 2:00. Asked for a culture and she said no, just disease progression and told us Mom had to be bed bound…… and she’d come next week. Left me really terrified about Moms condition. And not supported.
-_then bath aide caused an issue, he’s okay but doesn’t do much. I have to get all his supplies, Mom wants a female but they send him. This time Mom was very agitated and I was trying to transfer her to bed so he could do bed bath. She didn’t want to and said some mean things and I ended up crying by the time I got her in bed. Left room to regain composure and on return Mom was sitting on the edge of the bed and I just reacted instinctively and said don’t fall or something. Aide got angry and yelled at me, asked if I thought he would let her fall and told me to leave the room. I don’t feel comfortable with him now but not sure what to do. he doesn’t like any questions, when I asked him to wash her hair first rather than after washing her everywhere else with same wash cloth he ignores me. Even brought separate bowl of clean water so he could do hair with clean rag he didn’t. He often doesn’t wash her hair at all. He does a quick wipe and then just sits down and talks. Doesn’t put cream on her legs or anything.
-they rarely have enough supplies. A package of 14 diapers is not enough for a week and I ask for more. We just buy diapers etc. Even when calling in with list of items needed they don’t bring them
Now that things are getting harder not sure if we need a new hospice place or if it’s better to just deal with this place. Mom hates being in bed and the past two days she has railed against it nonstop. And I worry she will not be able to transfer to wheelchair soon if they want her in bed all the time. I feel worried that a culture for the UTI could at least show proper meds. If she declines or get sepsis because it’s not treated right it will be devastating.This is an emotional time, need support. And want Mom to get care hospices promise. Comfort, dignity, quality time.
We were in a rural area with some hospice clients living in remote areas. Our hospice looked after 265 clients in their homes in a 4 county area. I think sometimes hospice had an hour drive between clients.
During our first enrollment, 6 years prior, calls after 4:45 on weekdays and on weekends were routed to an RN in a call center out of state. I unenrolled Mom from the first hospice experience and did not reenroll her until 6 years later. Six years later and the staffing was a bit better. On the weekends you could call and talk to a local RN but you might be on hold for 15 minutes before you could talk to the local RN.
Many people should have low expectations of what hospice provides. I think the real value is access to a visiting RN and access to pain meds when needed.
When I enrolled Mom I was asked if she wanted her ongoing PCP or the hospice MD. I requested Mom's ongoing PCP. I thought, why not.
Also, we struggled to keep Mom's UTI's under control. Antibiotics are not as effective today as they were 30 years ago.
We were also chronically short of hospice provided supplies particularly chux going into the weekend. I frequently had to buy more on Fridays to have enough for the weekend. I remember even the mouth swabs were counted out like they were gold.
Mom was in home hospice for 18 months. If you are not happy with your hospice I would change it.
I just saw your note that you have changed hospice.
We only had 1 hospice in our area so I had to work with them. I think the real value was the access to an RN. Hospice was chronically short of CNA's. Our hospice covered 265 clients in a 4 county remote area. I kept our private duty CNA's for Mom. Hospice asked if we could cover Mom's CNA care and I said fine.
If Mom has the money you might be better served to hire a CNA from an agency to come out once a week to bathe Mom. The agencies in my area had a 3 hour minimum.
14 Depends is not enough for a week. Mom should be checked every 2 hours for wetness.
We used chux. The chux, the mouth swabs, and the creme was rationed like it was gold and it was not uncommon for me to drive out and buy more.
You can also access hospice from a Skilled Nursing Facility and a dedicated Hospice Facility.
If mom has some trunk strength and is able to stand and support her weight then a Sit to Stand would be a good option. If she does not have strength to support herself then you would need the Hoyer Lift.
I also hope that if you get a survey form from the previous Hospice you fill it out and mention the problems that you had. For a CNA to yell at you is unprofessional, uncalled for and should have been reported as soon as it happened. (and I would have requested that that particular CNA not return.)
Now I will comment on medicating mom.
Sometimes medicating someone has to be done in order to help make them comfortable.
Yes this can cause them to sleep but people towards the end of life do sleep more.
And another concern with medication is it can make a person more of a fall risk so that has to be taken into consideration.
And..if Morphine is suggested / used while it will also cause drowsiness it can help muscles relax that have begun to contract. It can help a person breathe more easily as it will relax chest muscles that constrict the chest. So please do not hesitate to use any of the meds suggested
I don’t think you’re wrong for asking questions or wanting her symptoms properly evaluated. Hospice should be a place where you feel supported and where you can communicate your concerns without feeling dismissed. At the same time, hospice care can look different as someone’s condition changes, and sometimes weakness or increased sleeping and being unable to transfer can be part of the dying process. But that doesn’t mean you shouldn’t be able to ask why something is happening and what the plan is.
I would document the concerns you’ve described and ask to speak directly with the hospice administrator or clinical director, not just the visiting nurse. Explain specifically what has happened with the UTI, the lack of response when she suddenly became too weak to transfer, the bath aide, and the shortage of supplies. Ask them what their plan is for keeping Mom comfortable while respecting her wishes and dignity.
And if you continue feeling that your concerns are being dismissed, I think it’s reasonable to ask another hospice agency about their services and whether transferring care is possible. You deserve to feel that someone is standing beside you, not that you’re carrying this completely alone.
Most importantly, please remember that you are not failing your Mom. You are advocating for her because you love her. Four years of caregiving, especially now that things are becoming more difficult, is an enormous amount for one person to carry. 🫶
Transferring, not sure if they have to send out someone for that. Family really does most of the physical work. Take advantage of the aide when there. They are there for more than bathing. Ask for extra time if you need it.
My Mom became bedbound because she would not get out of bed. I told them to leave her there. She had closed her eyes a few days earlier not to open them again. She was still responsive. Next was not being able to swallow. She was now in transition. The body was shutting down. No food or water was given because the body could not digest anymore. She passed peacefully.
The antibiotics, because Mom has taken them so long, she may be resistant to them. Risks outweigh the benefits? Hospice is end of life care. If Cipro clears up the infection, that is comfort care. Give her the Cipro.
And as far as any medications hospice prescribes or bring your mom it is YOU as your moms caregiver that is the one to give them to her and not hospice. So if you don't think she needs a particular medication, just don't give it to her, as you do have the final say.
So take your power back and start looking for a better hospice agency today, as there still are some good ones out there.