Mom has been in NH now for a month, on hospice for two weeks. She has end stage liver disease from cancer. She has been eligible for hospice for at least 9 months, and has surprised everyone. In general, I know what hospice does-while Mom was at home we talked to three different organizations. However, now that mom is in NH, I question the practical need. What real value do they bring other than extra cost? A case worker is supposed to visit 2x per week, but last week I got no update. I talk to the floor nurses almost daily.

Hospice is not an additional cost. It is covered 100% by Medicare. Yes, it is important to have hospice. Think of it as additional services, which those
near the end of life need.
Helpful Answer (16)
Reply to gladimhere

Hospice care will help with pain management for mom and with her prognosis. End of life choices and comfort. She will have extra sets of eyes on her, making sure she is as pain free as possible. This is in addition to her normal care recieved by the NH. They will work with the staff at the facility enhancing her care for whatever time she has left with you. Medicare pays hospice and medication for mom. You've made the right choice to have them involved to make things easier on her.
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Reply to Takincare

There’s no additional cost for hospice, it’s a Medicare benefit. It’s *usually* an extra layer of care in a nursing home situation and they provide support services to the family if they want it. My FIL was on hospice the entire time he was in a nursing home and he actually got better care that way. Hospice was an extra set of eyes and they managed his medications & kept him comfortable. Being on hospice didn’t result in the staff becoming lax in their caregiving duties BUT that is definitely something that can happen. Unless you notice she’s declining and seems to be neglected, I don’t see why you would take her off of hospice. If my FIL hadn’t been on hospice then he would have been in pain all the time. And at the end-of-life, hospice is really the only way to ensure your loved one isn’t suffering until the end.
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Reply to worriedinCali

My answer may differ from others but is something to look out for. When my mother was in a NH, getting good and attentive care, it was recommended at one point we add hospice. Quickly after the service was begun we noticed a big change in her care. It was so apparent that the NH staff was using hospice as an “out” not to do things they’d been routinely doing for mom. Suddenly when she needed a bath we started hearing “we’re waiting on hospice to come and do it” That’s one example of many caregiving tasks that were usually done without issue that became “let's wait on hospice to come” We soon canceled hospice and her good care from the staff resumed. I’d say it’s something to look out for in a NH setting. Hospice was invaluable to me much later with my dad in his home so I’d certainly recommend their services in many cases
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Reply to Daughterof1930
Waterspirit Jan 14, 2021
The issue was NOT Hospice but the nursing home and they should have been reported for failure to provide care that they were contracted to provide. Egregious failure.
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My experience when I used hospice for my mom was very very sweet.

My last memories of her were of her little body massaged with baby oil in her little flannel nighties, lying on her side, cozy and warm.

Funny story, one of the “services” provided by the hospice was a Priest who played the guitar. My mother HATED live music, I think something about her hearing, and when I was notified that she’d be serenaded, I had to race to the nursing home and tell them that she wouldn’t want it. THAT I always felt a little guilty about!
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Reply to AnnReid
jacobsonbob Jan 14, 2021
i imagine hospice provides several services that are not appropriate for every patient. Would it have been possible to inform them that this was the case?

I'm curious as to why you felt a little guilty about this? Was it that you felt unable to prevent this altogether, or that you were "depriving" your mother of something that many people would have welcomed?
My Dad just passed this week. Has been in an assisted living for 18 mos and Hospice for last month. Having that extra layer of support really helped. They could bring in resources/meds more easily, were another set of eyes/ears, could guide me/family in ways that staff may not know or have time for right now. They did keep in touch with me. I believe their presence not only helped me, but also the now besieged facility staff.

And there are unquantifiable benefits too. Despite lockdown due to COVID infections, I was allowed in to visit an hour each day; this made a world of difference for me and my Dad! Also, the Hospice Social Worker - who just happened to be fluent in Italian - Dad's first language - spent time talking/singing with him in Italian one day - this turned to to be my Dad's last lucid interaction with another human being. Priceless!

Also Hospice will be there for you AFTER you LO passes - to support you with grief - as needed.

And Hospice should not be costing you anything - paid by Medicare - at least here in NY.

Good Luck
Helpful Answer (6)
Reply to Dianed58
Daughterof1930 Jan 14, 2021
Diane, I’m sorry for the loss of your father and wish you peace and comfort
Hospice is ‘comfort’ care. Please take advantage of their services.

My brother was kept comfortable during his final days.

They also provide a social worker and clergy for the patient and the family.

The hospice nurses where my brother was were angels.

I do encourage you to consider options if available. Not all hospice organizations are the same.

Read through the literature. Speak to the administrator of the organization.

Wishing you peace during this difficult time in your life and an easy transition for your loved one.
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Reply to NeedHelpWithMom

Contrary to popular belief, hospice does not do care other than provide supplies and a home health aid twice a week for a half hour. You get a weekly visit from the nurse and every six months a nurse practitioner will re-evaluate her. I had mom on hospice for over 2 years before she died, and I did all the care. I had to change mom at least 5-6 times a day so a home health aide did no good so I did not even bother with that. When mom was actively dying the nurse visits daily to make sure she is comfortable.

Hospice was very handy though--the diaper and glove supplies, ointments, hospital bed, oxygen were all free. I got her routine meds ordered, and occasional labs. Hospice was very helpful.

Alzheimer's did not kill mom. With insulin-dependent diabetes, kidney and liver disease she managed to live 90 years old. Those other diseases killed her, because eventually I got a feeding tube in and it kept mom very comfortable and hydrated. I knew mom was dying when she had residuals; normally she had no residuals from the previous day's feeding and water. As soon as I seen those residuals I called my brother to come down as mom was dying because her body was shutting down. She died exactly one week later. But comfortably. I never regretted the feeding tube because dying of dehydration can take weeks. I spared mom that. BUT that feeding tube was a LOT of work. I never had any problem with it. Mom never pulled on it, and I kept it covered with a "tube top" I found on Amazon -- so when I turned mom it would not get accidently pulled on by covers. It worked great around her abdomen and was very comfortable for mom. Mum was so comfortable not once did hospice have to break open that comfort pack. She really did die in total peace, and she did not have a single sore or mark on her skin.

But I had to care for mom 24/7 around the clock and she was my constant obsession as her level of care was frequent. Try doing that for YEARS and YEARS and see what that does to your mind. It's been over a year and I"m still recovering from mom's death, but I am gainfully employed, trying to get my Master's degree and just carrying on with the pulse of the living. Mom is in a better place from the ordeal called life. Only the living suffer.
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Reply to cetude
Tynagh Jan 14, 2021
You did work above and beyond. May God or the forces of the universe look kindly upon you. I tried to take care of my dad but ultimately resorted to in-hospice care at a wonderful facility. It was a blessing to all. May you heal from the trauma of providing care. May you find peace, success, and even some wealth in the future.
Do you “need” both? NO Should you have both. YES.
Hospice will take over bathing when they are there so nursing home will no longer do some of the things they had done previously. But having Hospice will have another set of eyes on her, Hospice can get supplies and medication to her faster. Hospice also supplies skin cream and pull up or tab type briefs.
There is no charge for Hospice it is covered by Medicare, Medicaid as well as most insurance. Because Medicare covers the services the nursing home will not duplicate what hospice covers. This is why if Hospice staff does bathing nursing home staff stops.
The other advantage is Hospice staff is probably in the building every day so if there is something urgent mom needs they can contact someone that is probably only minutes away.
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Reply to Grandma1954

My mom was in Nursing home & got hospice the last 2 weeks of life. I wish we did it sooner. Hospice can move & administer medications so much faster to make the patient comfortable, better than NH. There are different hospice organizations you can chose, if you are not happy with the one you have talk to the Nursing home nurses they should have other names for you. We got to choose the hospice we wanted, but I asked the nurses who they recommend & I went with them. Hospice was great care & wonderful they are in charge of her care & NH worked with them. But I had confidence in them & didn't nick pick every little detail. Mom was comfortable & that is what mattered. Its hard to go thru.
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Reply to Labmom

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