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.
near the end of life need.
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!
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 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.
BTW, if the patient is under 21 y/o, attempts at curative treatment are "allowed" even if hospice care is also being provided.
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.
They also provided therapy(counseling) for my 18Y/O special needs son.
She has been off of hospice for almost 2 years now and I am caring for her at home. However I am considering bring hospice back in.
Is your mother's NH stay under Medicaid pay or private pay? There is no cost for hospice care in either case. If your mom is a Medicaid patient her care, room, and supplies are all covered at no cost to her. Hiring hospice will be covered by Medicare also at no cost to her.
If she is private pay, she is paying for all care, room and supplies necessary for her care. Hiring hospice will relieve her of some costs. It will not cover the cost of the room but will pay for all nursing care, medications and supplies necessary for her care (incontinence pads, gloves, etc.). Hospice will not offer any curative care but will concentrate on comfort and dignity of life in her final days. Hospice will take over her care and relieve the facility of doing that.
If you want better updates and more frequent visits, talk to the case mgr about that. Also you may want to take advantage of other Hospice services such as chaplain visits and music therapy. My wife had a hospice nurse come very morning to get her day started by dressing her, showering and getting her to breakfast. I always recommend hospice care.
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.
It doesn't matter what age you are, if you qualify for hospice and a doctor orders it, your insurance will pay for it.
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
Depending on the nursing home, the staff there may not be able to administer certain medications to your mom. The hospice staff are another set of eyes who are on your mom and will be available 24/7 to help her with any pain issues. I know that when my dad was on hospice (at home), there was a nurse there the last 24 hours he was alive. I know my mom's nursing home wouldn't be able to spare a staff member to be with her that long as she was dying.
Medicare pays for hospice 100%, so you shouldn't have any additional expenses. If you don't like the way the hospice people are doing their job, have a conference with your caseworker, and if you still aren't satisfied, fire them and hire another company. I fired the first company I used with my dad because they weren't responsive enough.