I just started training to become a hospice volunteer. The criteria is 6 months prognosis with a terminal disease (cancer, heart failure, dementia). Hospice is A) covered by Medicare and most insurance; B) given in the home; C) provides support for the entire family; D) offers in-hospital respite care if you need a break or want to attend an event.

The #1 thing hospice patients say is "I wish I'd started it sooner." The average length of stay as of 2018 is 17 days, but it offers nursing care, a social worker, volunteers, etc. etc.

Just wondering who's tapped into it. It seems wonderful. The entire goal is to keep the person at home and comfortable, with company and care for the whole family.

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I am a retired Chaplain who served over 20 years hospice patients, their families and, the interdisciplinary team members. At different times I also managed the Volunteer Program and, the Bereavement Care Program.
Helpful Answer (1)
Reply to janicemeyer18

My mom who is 95 has been on Alive Hospice since May and has declined ever since. She has ALz, Vascular Dementia, Stage 4 Kidney Disease. I was hesitant to have in home Hospice but it seems to be ok except for all the meds they want to give and they make her fall and she is always fighting me about not wanting to take pills. The nurse who is very nice and been doing this 14+ years only comes once a week and we had a bath lady that was coming but she couldn't keep from getting my walls and floor wet when giving my mom a shower so I asked that she not come back and they have no other person in my area so I do it myself now.

My mom doesn't do well with meds that cause her to be sleepy because they only make her fall and they are meant to make her sleep longer but it never seems to do that and that is a huge risk because she has had several falls where she could of easily broke her neck but didn't, thats how bad the recent falls have been.

My mom will never come off of hospice due to her decline. Both feet are swollen and her belly is bloated with some fluid most likely from the toxins not being flushed out because of her stage 4 kidney disease. Her feet are mottled at times and her temples are sunken in all part of her decline from what the nurse has told me. She weighs 109 pounds but has gained 3 due to fluid and she has lost 4 inches of body mass. She drinks less than 4oz of fluids a day but eats very well. I wish I new how much longer as it is so tiring and stressful :(

Respite care is only offered for 5 days but its not really useful if you can't use it to pre schedule going away, you have to take it when they call or move to the bottom of the list. She is now on the list but am told it will be Nov or longer before its available.

The supplies they offer is very helpful (Gloves, Chucks) except for the velcro depends as they are not the easiest to get on and fixed to fit the right way so I just buy them and my mom goes through a lot. I wish they offered wet wipes cause we use alot of those too.

We have a a bedside toilet which isn't being used yet due to fear of her falling over on it, a transport chair we just got and use it. Not ready for a hospital bed just yet and my mom wouldn't allow it anyway.

I am using the grief counseling which they give 12 free sessions then its on a sliding scale. I am using it for anger, resentment towards my siblings who don't do anything to help nor do they come around and to help with the nasty demeanor issues from my mom. Its a lot to deal with alone.

So far this is my experience with in home hospice, like I said I love the nurse and the social worker who calls and comes by to check on us. I don't use the chaplan since I have no need for it at the moment. So in my opinion hospice has its pros and cons.
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Reply to CareGiver2Mom

TeethGrinder65: My late mother was on palliative care, not hospice.
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Reply to Llamalover47

I have heard good things about hospice but I did not have a good experience with hospice. I had 2 different ones. ythe first mainly just came to chat then said my mom graduated as she was not getting worse. They charge between 4 and 7 K to Medicare and we sometime had one chatting visit a week. They tried to put a too big catherter in my mom which hurt instead of getting the right size. I feel they overmedicated her at the end when she was not in a lot of pain, and that is what killed her. It could be because of covid they did not have the time to take their time. Instead of explaining what the last signs would be they gave me a book. I would be careful at a time when you are very stressed that they are doing the the right things.
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Reply to Hatethis

Our primary doc recommended Hospice In-Home Care for my wife because her symptoms indicated mid to late stage Dementia (she refuses to be diagnosed by a qualified doctor) and she began refusing to go to scheduled doc appointments. After our 1st interview, I didn't like the idea of giving up so much control. She could NEVER be alone again. Hospice requires 24 hour monitoring. My wife is not end stage, not even close. So I declined. This is her 3rd year of progressed Dementia; 3-yrs ago Nov 2019 she woke up and didn't recognize who I was. After continued missed appointments and arguments, I decided Hospice In-Home Care was necessary this past Jul 2022. The average life span goes anywhere from 2 to 12 and more years with Dementia. She is 90. Given her overall health and determination to live to 100, she will go the long path unless other health events take her life. I am so glad we went on Hospice. The nurses are the front line of the program. My wife is so much better now than before. She was under Pain Management for her inoperable chronic back pain, stenosis pain, and severe knee pain. Her heart condition won't accommodate surgery. Her PM doc would only give her Oxycodone 2xday and Gabapentin for stenosis nerve pain which never curbed the pain below a 7-level. Hospice nurses immediately tried MS Contin which was too strong causing side effects. Tried Oxycontin 2xday with Oxycodone for break-through pain. For the 1st time in years, her pain is manageable and most days level 3 or lower. Hurray for our Hospice Nurses who rush to her needs at any time of day/night. They also offer bathing/dressing assistance, spiritual listeners, and social worker visits. You choose whether you need them and how often. Our Primary doc originally wanted to get me some Respite Care. But it is a no-go for us because it has to be in a Hospice facility and she doesn't want to leave home. Currently, $434/day. Local Memory Care Facilities offer 24-hour Respite Care, minimum 3 days, for $250/day. Bottom Line: Hospice is a clear choice for families with loved ones who need loving care and struggle to leave home.
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Reply to NoTree

My father inlaw was in hospice and they were such caring people...They come when you ask them too..
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Reply to kenobuddy

We don't all qualify for Guardian Angel positions; I am in awe of anyone who can endure such grief...................they would fire me for crying too much.
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Reply to ConnieCaretaker

I was a hospice volunteer and found it to be the most rewarding job I've ever had. I felt I was doing something to really make a difference. I would sing to people or read. Sometimes just hold their hand. One lady was close to her end and I fed her small pieces of bacon and we just giggled together. I hope that some full-time carers out there would realize what a difference Hospice Volunteers can make. A difference not only that the carer can get some respite, but the patient can have some social interaction and some sincere love. Since covid, a lot of Hospice patients have been too scared to have a volunteer, but I urge you all to think twice about that. They can make a huge difference.
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Reply to Confused5

I helped with my dad's care when he entered Hospice. Mom was still healthy and vital at that time (she was only 74), but she needed our support and help.

With 6 kids living at the time, only 2 of us were really able to be of any use. My brother with whom my folks lived and me, who lived 1 mile away. I could go up and spell mother for as long as she needed me.

Daddy was on 'active' Hospice for about 3 months--give or take. Once he was unable to swallow, he went downhill fast.

The Hospice people were FABULOUS. I cannot say enough good about them. The bath aides, the nurses, the support staff--it was primarily for mother's peace of mind. Dad was a pretty acquiescent patient.

I felt well trained enough to be left alone with dad and to administer his meds. It actually was a really special time for me.

Daddy passed in peace, and NOT during the holidays (he died at 12:45 am on New Year's Day--I don't consider that a holiday).

Anyone who feels Hospice is nigh unto murder need to see a GOOD representation of EOL with Hospice. We had planned for mother to use the same company and knew it would probably have begun after the first of the year..but she passed on her own, 3 weeks ago. She knew she had the Hospice option and was unafraid of death.

It helps a great deal if all who are involved are on the same page with the concept of Hospice. The only 'dramas' that I have seen have been where somebody in the family kicks up a fuss or refuses to help out.

For our dad and family, it was peaceful and kind. I, for one, am glad it exists.
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Reply to Midkid58

Hospice was wonderful for my mom and me when I had the good fortune to be able to get her out of nursing home into an end of life home, where there was only one other person being cared for, with 3 caregivers and the hospice team. The chaplain was an amazing help for me. The nurse came in whenever called, beyond her 2 days a week requirement. The aide was sweet and caring. A group of 3 ladies was brought in to sing to my mom. Had there been an opening for my mom for this kind of care long before this home became available so much suffering could have been avoided. The nurses and caregivers at the nursing home did their best, but it was awful. 14 patients for one caregiver. Hundreds of patients in the building sitting in wheelchairs in the hallways crying. We should do better for elders in need. Luckily I could be there every day to help my mom, but many other patients had no one but the overworked and underpaid staff. And the cost to my mom was $12,000 a month! Hospice is only a very very good first step. Thank you for volunteering. You are greatly appreciated.
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Reply to ArtistDaughter
babsjvd Sep 19, 2022
Until corporations start paying caregivers decent money, there will always be staff shortages. I am sure there is much corporate greed..
I have heard it is great I have been offered it several times for my wife. But I declined because her family history says she will live a long time even though it does not look good. Her mother died 3 times and was resuscitated. She lived in a care facility for 10 years. Knowing this I have asked what happens if she lives longer than the 6months. No one has a good answer but I am sure Medicare with have something to say.
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Reply to Sample
TeethGrinder65 Sep 19, 2022
Hospice wouldn't end if your wife outlived the six months' guess. But she would have to have a DNR and not be seeking curative treatment.
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Thank you for volunteering. My MIL was in hospice in our home for the last 3 weeks of her life. She had cancer and was receiving immunotherapy, but it did not go well. (The TV commercials make it sound like a wondrous miracle cure; sadly, that isn't always the case.) When she decided she didn't want to receive the treatment any more her oncologist contacted hospice.

We didn't have any volunteers but the nurses and the bath aide were marvelous. I especially appreciated the bath aide, she was so kind and gentle. And the nurses were always available by phone 24/7 and would come out day or night if they were needed. Unfortunately my MIL had a lot of pain and it was tough to manage at times with the medications that can be used in the home, so we had more than the typical 2X week nurse visits. But they were always right there when we needed them. Everyone was just wonderful.
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Reply to iameli

Hospice is a God send!

My mom was on 3 months, in a memory care. The extra eyes on was crucial. I can’t say enough about how valuable these people are. From a nurse visit weekly, the cna who came twice weekly
( who my mom in extreme pain one day ) the clergy who lifted my mom up weekly, the social worker monthly , and the volunteer every other week.. my mom and I was blessed to have had this help.
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Reply to babsjvd

I agree. Sometimes it’s the doctor who keeps you from accessing hospice when you really need it. I asked my dad’s doctor many times to see if we could
get on hospice and he kept insisting my dad wasn’t ready and made us go through PT and OT first. Finally I could no longer get him in and out of bed. I called the doctor on call and he told me to call
911 and have my dad taken to the hospital. Once there, the resident doctor quickly agreed my dad needed hospice. He only lived 2 weeks after that. Hospice would have been a great support to me but you can’t sign up without a doctor’s recommendation.
Helpful Answer (2)
Reply to Dizzerth
TeethGrinder65 Sep 19, 2022
Actually, you can. And anyone can get a hospice referral. I'm so sorry you didn't get into the program sooner. Condolences on your dad. <3
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Both my parents were under hospice care, and with the exception of Vitas (the first company we used for Dad), it was a wonderful experience.

Dad was on hospice for about a month, and after canning Vitas for being non-responsive and frankly heartless, his death was handled with great care and dignity by a smaller, local company. The nurses who came in at the very end were so kind to ME as well as to Dad, and that was so vital. We worked as a team before and after his death.

My mother was on hospice for seven months in her memory care after I decided we were done with hospital trips. I used the company that served most of the hospice patients in her MC, which was a great decision. The caregivers at the MC worked as a team with the hospice nurse, and they all did a fantastic job while allowing me to be hands-on with my mom's care even during the pandemic.
Even better, the hospice nurse was another set of eyes on Mom, which was great.

Everyone needs to know how valuable hospice is. They do not withhold medications, food, or water, and they do not hasten death. Families who sign up their loved ones for hospice need to understand what it is (end of life care) and what it isn't (caregiving).

There have been numerous people here who have posted blatant falsehoods about hospice, accusing them of killing their loved ones. Nothing could be further from the truth, and I urge anyone who chooses hospice for their loved one to read everything they're given by the hospice company and ask questions of the social worker.

Hospice workers and volunteers are truly angels of mercy, and the last thing they need is to be slandered.

Thank you for volunteering.
Helpful Answer (10)
Reply to MJ1929

My father passed away a month ago on IN HOME Hospice care. The CARE, LOVE, RESPECT, KINDNESS was beyond anything we could have expected.

Kudos to you for venturing this very intimate unselfish volunteering.
My father was only in this for 2 weeks, but the love from the volunteers and Hospice team was truly a beautiful experience.
Helpful Answer (6)
Reply to OpenBlanket
Cover999 Sep 14, 2022
Nice you had a very good experience. I wonder if the same would be case if it was administered in the hospital.

I'm sorry for the loss of your father.
The downside if Hospice is in the home, is the family is responsible for giving meds. The aides, on average, come 3x a week for an hour. Some services, if they have the staff, may be able to give longer. An hour is not long enough to run to the store. If the client is 24/7 care then family needs to be there all the time. Nurses only come 2x a week maybe less. Family is still responsible for the physical care unless they can afford to hire an aide. Some families are just not cut out to do this kind of care. To place the person into a Hospice facility costs the family money. Medicare only pays for the care not the facility.

There are good Hospice and bad Hospice services. They all follow the same criteria but may not have the best staff. One woman wrote on here the Nurse did nothing. The woman had to place the orders for Depends etc. Another poster did not even know that Medicare supplied Depends. And yes, some people were not aware of Respite care. But that is only 5 days at a time.

My Mom was in a LTC facility when Hospice was brought in so I was not involved in her care. Mom took care of my Dad while he was on Hospice and had a good experience.
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Reply to JoAnn29
notgoodenough Sep 14, 2022
I never felt it was a downside to my being responsible for giving my mom the EOL comfort meds. In fact - and maybe I'm in the minority - I much preferred being the person to oversee it. First, because I knew my mom best, and could tell when she was in discomfort, and secondly, I didn't have to wait for and then explain WHY I thought my mom needed more. I could just give it to her right away, before her discomfort became real pain.

I get there are a lot of people who feel they aren't professionals and therefore have no business administering meds, for fear they might make something "worse"; but I was able to reconcile that my mom was actively dying, and there wasn't anything "worse" than I could do to her beyond what her body as already doing.

The *hardest* part of Hospice, for me, was not calling for an ambulance when it was clear she was beginning to actively transition. Stepping back and only giving comfort meds while nature took its' course was difficult, even with the knowledge that it was mom's wishes. But I am grateful to Hospice for the support they not only showed my mom, but my entire family.

Teethgrinder, thank you for your decision to volunteer, I think that is truly an act of kindness and self-sacrifice beyond the norm!
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Thank you for your willingness to volunteer. My father received wonderful care from hospice services and we’re forever grateful for their wisdom and guidance.
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Reply to Daughterof1930

My Husband was on Hospice for almost 3 years.
While he was on Hospice I became a Volunteer. Because my Husband was on service I was not able to "work" with patients so I did work in the office.
I continue to Volunteer.
I still find it difficult to sit with patients although I do occasionally.
I do not think I would have been able to care for my Husband the way that I did if it had not been for the help, encouragement and support I got from my Hospice Team. I always encourage people to make that call. As with any other medical service if you find it does not work out you can discontinue Hospice and either try another or return to your previous PCP.
TeethGrinder65 ..thank you for Volunteering.
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Reply to Grandma1954

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