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.
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.
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.
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.
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.
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.
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.
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.
I'm sorry for the loss of your father.
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.
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!
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.