Poor communication from hospice. Any advice?

Ask the AL which hospice is the one most of their residents use. That'll tell you who works well with their staff. That's who I'd hire and did when my mom was on hospice in MC. It's also helpful because if their nurse is visiting someone else at the facility, your mom might get a visit piggybacked onto someone else's. Depending on how many clients they're serving the nurse could conceivably be there every day.

As for them calling you, what do you want them to call you about? At the very least they should be giving you an update on Mom's condition after every visit.

I'm a big advocate for putting your wants/needs into writing so it's really clear what your expectations are. Put it all down, send it to the hospice caseworker in an email and ask for some clarification on your expectations and what they're providing.

If they still fail to step up, fire them and hire someone else.

I suggest that you talk to the Care manager of the Hospice Team and ask what is going on and get information as to when the Nurse is at the facility seeing your mom, ask when the CNA is there to give mom a bath or shower.
Some Hospice have Apps that can be used to communicate with the Team. They are secure. General Texting is usually not secure.
But you are entitled to answers to your questions. If you are not happy talk to the Supervisor and if that does not work you can contact another Hospice.

Glad to report that my carefully worded e mails followed up with phone calls have improved things quite a bit. Moms lymphoma is affecting her mouth and throat and making it hard to eat because of being so sore. PRN more robust pain meds now being offered and I now get personal reports from hospice staff nurses after each visit twice a week. . AL staff still a work in progress ....I had a meltdown in the directors office after seeing how miserable mom was yesterday. I bought her an assortment of flavorful soft foods , with the Directors blessing, but the aides were not giving them to her. They dont even need special prep....puddings, yogurt , popsicles , and carnation breakfast in bottles. I firmly again explained to AL unit Director that watching my mom go through this was heart wrenching and stressful enough for me without worrying that she is not getting some nutrition because staff are not willing to walk a few extra steps to open a frig and put it in front of her when I cannot be there. I have insisted that it be put on her care plan and that I am informed if she refuses her special soft foods.

I had wonderful communication with the hospice nurse who was the main contact for me with my mother. She would call and or text and give me the updates on all her vitals. What you are describing sounds unacceptable and I would make calls and perhaps get a different hospice agency if possible.

The AL facility does not sound that great either. Can you speak to a director? Ultimately it is up to the resident to partake in activities but it would be nice if staff could make suggestions to residents. It may be that Covid affected the level of activities but it should start to open up. You really need to speak to a director to get better answers.

If your mother is receiving hospice is she still able to attend activities? Please reach out to get better assistance.

What a shame that you aren’t getting the service that you expected and deserve.

You are a wonderful advocate for your mom.

I wouldn’t hesitate to ask for clergy to visit again. Yes, they are busy but they should respond to you.

My mom’s hospice was extremely responsive to our concerns and my mother’s needs.

Best of luck in getting this situation resolved soon.

Can you get hospice to be more assertive with the staff? They gave staff where my.mother was alot of direction. Once this is over you should definitely report the facility negatively. Are you able to feed your mother yourself at any times? I.am so sorry you are experiencing terrible unacceptable behavior at this stage.

tygrilly,

It’s really hard waiting for a cancer diagnosis. My husband was diagnosed with prostate cancer. He was fortunate to catch it early. He had the choice of surgery or radiation. He chose radiation and is in remission now.

Will be thinking of you during this difficult time. Sending many hugs your way.

Our experience was visits from the nurse two-three times per week, bath aide twice per week, one visit from social worker early on to document her wishes. There were some offers of "extras" most of which MIL was not interested in. I never heard anything about music or pet therapy or massages. No volunteers to sit with her. I suspect some of these things, such as lack of volunteers, were due to Covid (early 2022). We did find the hospice nurses to be very responsive when we had questions or needed help managing her pain. The phones were staffed 24 hours a day and you could get advice then or wait for a call back (or visit if necessary) from the assigned nurse.

It sounds like you don't live with your mother but stop in to see her every day. Does she mention any visits from Hospice or is she unable to remember things like that? My MIL lived with us while on hospice so we were always there when they came and we definitely spoke up when we had questions. I'm not sure how much communication they would have initiated with us if we weren't right there. If they are fulfilling the basics, that may be all you can expect.

You need to call the Hospice director and tell them Mom is not getting up for what she signed up for. The AL can tell u when they sign in an out. And as far as I know, they mainly visit during working hours. The Nurse needs to be on 24/7 call. If u are not satisfied, get another Hospice to come in.

Thank you. If circumstances were different she would be in
another aL any now. Im
documenting every time I have to
reach out to get basic info. Tomorrow will be requesting ,
in writing, a joint meeting with AL Mgr, DON for
facility and Director of Hospice.
Its hard enough to deal with
loved ones imminent passing
without people who claim to care not doing their jobs.😡