I am really confused about my mom's situation in hospice.


About 2 1/2 years ago, my 90-year-old mom, who was a heavy drinker, fell and hit her head quite badly. When she was released from post-acute care facility I searched for a good place for her to live. It turned out that because of the level of care that she needed (she seems to suffer from short periods of psychosis) a memory care unit was a perfect fit -- except that she is quite alert! Then about one year ago, she stopped being able to feed herself and quite quickly she was on death's doorstep. The NP who was visiting her in memory care recommended her for hospice and she was admitted and she got to stay in the memory care facility where she was living. Now for one year she has been in hospice and, yes, she is getting weaker--she can no longer stand. The only person who comes to see her from hospice is the fellow who showers her...he checks her for bed sores and does a good job, but he is not a nurse. She is still very alert, but in the last couple of days she has caught a cold. I don't think that the hospice nurse comes to see her at all... A few months ago when Mom had gained 8 pounds I asked if she might be discharged from hospice, but I was told that given the level of care she required if she were discharged from hospice she would have to be moved from the memory care facility that she been living in now for two years. Is this Normal?

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I have made some phone calls and will go to the Medicare website next. Thank you both for your advice. Your answers help me feel less alone as I am going through this.
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I remember back when my late Mom was in long-term-care due to a head injury and was on Hospice for a few weeks. The Hospice group that I used was very attentive, would visit Mom on a regular schedule, more so then normal because the group had other clients in the same facility. The visits were written in the sign-in book at the entrance desk that all visitors needed to sign.

Now I didn't get to see the Hospice staff as I was employed and only got to visit after work. I did get weekly telephone calls regarding my Mom's condition.

I might think that if a client is on real long-term with Hospice that the amount of visiting wouldn't be as active as with a client that only has weeks or days to live.

One thing, watch your Mom's cold. Colds at her age can become difficult.
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Thank you, jeannegibbs, for your response. I take no offense at your question--I was wondering about that myself. So I asked my mom (who is still very alert) if the nurse has visited her and she says no. Now the important thing that you write is to call and ask for an accounting of services. The minute I read that, I was stunned to realize that I have gotten absolutely no medical reports from Medicare or the Hospice agency. I certainly get Medicare prescription reports every month, but totally lacking any info on medical care. Wow! Thank you for the advice.
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I think that it is "normal" (or at least typical) for a hospice nurse to visit once or twice a week, and for there to be additional visits by volunteers. This was the case both for my husband at home and my mother in a nursing home. Husband was on hospice care for 5 week, mom for 3 months. Perhaps things are different when it goes into long term care. Others may be able to comment about that.

Please don't be insulted by this, but is it possible hospice personnel see your mom without you knowing it? I don't know how often or for how you visit, but could you be missing the visits?

Hospice should have given you a number you could call 24 hours, and also a normal business-hours number. Do call them and ask for an accounting of what services she is getting. Medicare is paying for hospice care. You are entitled to know what that is in this case.
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