Whose loved one is on hospice care?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.