Let's share POSITIVE hospice experiences!

I was a team leader for Hospice of the Valley. Teams have RN, LPN, CNA, Social Workers, Chaplains, and a physician overseen by the Team Leader. Working at Hospice is a calling ... it is not for everyone and the folks are caring, talented, professional, and experienced and specifically train for Hospice certifications. It is a challenging job because the relationship is with the patient and the stress is caused by the family. The family issues of guilt, hopelessness, fear of loss, and control are the challenging part. Please -- trust the hospice team and their abilities -- they have your loved ones best interest as their goal. Be thankful for people who are willing to be there for your beloved family or friend.

Our hospice experience has been amazing. My 65 year old brother was diagnosed with a massive glioblastoma last March. It affected his executive function, so his judgement, problem solving, impulse control, memory, and personality were greatly affected. So often doctors recommend radiation and chemo for treatment but glio has such a poor survival rate, so I made the difficult decision to place him in hospice. I knew he wouldn't tolerate treatment either. My goal throughout this journey, which started months before the diagnosis, has been to keep him safe and comfortable if not happy. I'm 1600 miles from my brother and his daughter is just 23 so our caring for him was not going to work. Through the Medicare website I created a list of nursing homes I wanted to place him in and gave it to the hospice social worker so she could call. Even with Medicaid he ended up in a four star overall rating and a five star resident care rating. The thing with hospice is that if the nursing facility is subpar, they are an extra set of eyes. There are a number of hospices in the area but I found the two best on the Medicare website. In this instance I asked a social worker at the Brain Tumor Network to call and get a feel for them. I write all this because I do think some hospices are better than others. Some research can make a big difference. I figured the social workers would have better questions than I had, and I was so over making telephone calls.

When he arrived at the new facility, he spoke very little and wasn't pleasant to be around. Hospice asked me what his interests were and I told them just playing his guitar. They brought in a local musician who played classic acoustic rock for him. My brother started opening up, talking, smiling and laughing and tapping his hand to the music. Everyone was so surprised and it even brought tears to his hospice nurse's eyes. The next time his daughter brought his guitar so he could play along. Not that it was terrific but he got to be a musician--they had his playlists from the band so they could play familiar songs. They had several "gigs" over the summer and fall. A couple of times hospice took him and his daughter to a pizza pub where the musician had a gig. I bought him an Alexa so he could listen to the Beatles, AC/DC, whatever. Music made him so much more comfortable and happy. We wouldn't have known this if hadn't been for hospice. In February they threw a birthday party for him, with a big cake, cards and a couple of cool rock oriented presents. Plus they got the musicians in to play for him. The party really touched him--I don't think he ever had a birthday party with so much love.

The hospice nurse comes twice a week but more when his condition worsened for a while. She's kept me up to date on him, the drugs she prescribed for him and why, and she's reached out to my niece--particularly when there was bad news. She prescribed a bed that was harder to fall out of since his brain says he can walk but his legs can't. I can contact her with my questions. There's no doubt in my and my niece's mind that hospice and a great facility prolonged his life.

The staff at this nursing facility are wonderful. I can tell they really care about him. He has been in hospice for nine months now--way longer than we ever would have imagined--and I think he was happy at times. In the last month he has taken a serious turn for the worst. But even when he's resting you can tell he's listening and enjoying music from Alexa.

It's sad that people think that hospice is just for the end. If you wait til the end that feeds that perception. Our hospice created so many great memories for us with my brother and that's what hospice is about today--making the best of the time left to live.

Hospice is there for support and when the pain becomes unbearable for the ill person . I did not have much interaction with them . My brother passed 10 days after contacting them but I am
glad they helped and gave another opinion besides the Nursing home .

My husband is currently in a Memory Care Facility with Alzheimer's. Having suffered two strokes that changed Alzheimer's progress and behaviors, Hospice was recommended to us by the Memory Care Director. I met with Hospice admission staff at the facility where my husband lives. They were extremely compassionate and walked me through the program, with questions and answers before I was presented any paperwork to sign. My husband has now been on Hospice for four months and I feel it has benefited both he and I. COVID restrictions temporarily presents some limitations for the Hospice staff, limiting the Hospice staff one visit per week by each the CNA and the nurse. A social work and a pastoral counselor once a month. The same day the nurse visits I receive a call with an update of my husband's condition and presented any new condition that may need treatment within their limits. I NEVER have to agree, it's always presented as a suggested treatment and it is always my choice. The Hospice staff work very well with the Memory Care staff for the benefit of the resident. For the spouse this level of extra care (all paid for by Medicare) is invaluable. When my husband's health declines to the point of needing incontinent supplies, a hospital bed or wheelchair they take care of providing these items, also covered by Medicare.
I am also encouraged to talk with the nurse about any concerns I have for myself while walking this difficult Alzheimer's road.
While Hospice is usually known only as "end of life" care, it is so much more than that. I will always be grateful for having them as part of our care team.
Karen

My mother had her Hospice Eval today. She has vascular dementia and is entering her final stage. Since she can still speak, is somewhat ambulatory, and has some sense of self awareness, she did not meet the criteria for services under the dementia umbrella. This wonderful woman "fudged" things a bit and since mom is incontinent.., has little appetite and drinks sparingly, lost ten pounds in six weeks, has difficulty swallowing, she was approved under a different set of circumstance. Her supplies will be delivered tomorrow....hospital bed, chux, oxygen, all the necessities to keep her comfortable. Medicare covers everything....including her meds and whatever else is needed. I was beyond impressed and so grateful. It's been a long haul for dad, my sister and I.....to know that now we have services available to us in this final stage gives us peace of mind. I know we would never be able to do this on our own since at this juncture we are completely burnt out. So now mom gets her wish.....to leave this world in the home that she loves. And we have extra hands to help get us through.

I am having a good experience with hospice care. However, one thing you mention in your post confuses me. Your mother's hospice conferred with her PCP before they administered medications? My understanding is all hospice's have a medical director whom becomes the patient's "doctor" when they are accepted for care. This effectively removes the PCP from caring for the patient. How was it that your mother's PCP was allowed to have part in medication admin?

My father was in home hospice for 21 months for two different conditions. He required around the clock care and my sister and I were the tag team. Our mother had dementia, too. Over the 21 months we had a series of nurses and CNA‘s overseeing my dad‘s care and everyone of them was excellent. They took a personal interest in him and he lit up every time they came to visit. My sister and I think that he really liked all the fussing. A companion came every week and the two of them enjoyed some great conversations. We did not utilize the spiritual aspect as my brother is a priest.

We were asked by the hospice company’s physician to participate in a program training medical students at our nearby medical college (a major research university) on end of life care. It was a two pronged approach covering both the patient’s and the family’s perspective. Every week over the course of the entire medical school term, the same medical student came and interviewed us and my dad. She learned about the joys and challenges of life with a family member in hospice. It was the first time the university had tried this program. Apparently, the presentations made by the students for their final grade in the class were so profound that the medical school decided to make this a required class for graduation. This is how much hospice companies care about our loved ones.

I gotta agree with you. We had home hospice for my mama and my partner’s stepmom provided by the same company so we got to know the nurses and staff very well.

I am so sorry to hear that people have the experience that leaves them thinking that hospice killed someone they love. How terrible.

The first thing my mama’s hospice nurse (she’s Catholic) did was show us the little bottle of morphine and declared emphatically that, “You cannot kill your mother with this even if you give her the entire bottle!” She went on to explain the letting go process for the patient and how it’s going to take however long it takes. The morphine is there to help them be comfortable and let go but we weren’t getting lethal doses by any means.

We received a lot of education about how hospice works and found them to be responsive to our every request. We got to know our primary nurse and a few others who would fill in, the chaplain, and the aid who would help with baths very well. My mama thrived under hospice care and we would joke about taking her off but she didn’t want to go to the hospital anymore.

We only gave mama ativan or morphine at night if she struggled with anxiety to sleep. At the very end we did give her morphine frequently since she was dying from respiratory failure and it helped calm her. I gave mama the last does of morphine before she passed and I don’t feel like I killed her.

We have recommended our hospice provider to anyone seeking hospice help and will call them when the time comes for my partner’s parents living with us now.

I have heard stories not as successful as ours so I highly recommend learning as much as possible about what to expect from hospice.

And I totally agree with you on calling the doctor or hospital if you feel it’s important. It’s OK to drop out of hospice to get care then return when necessary. My cousin has COPD and lives in a rural area where hospice is not as efficient as it is here in Atlanta so she and her doctors agreed that her DNR was sufficient in not prolonging her life while she still goes to the hospital for stabilizing care.

Without home hospice we would have had so much more weight on us navigating what to do when. We’re so very grateful they guided us through the entire experience and were there for us all. We even got a year of grief counseling and a special church service for their patients who pass.

My brother, whom I didn't see too regularly since he lived 3 hrs. from me, began to complain of not feeling well. He was in his late 70's and lived with his wife of many years. (Their one child, now grown, lives in Australia)
He began spending more time in bed, was quite weak. Though he had been to the Dr. several times, he couldn't (or wouldn't) tell me what the Dr. had told him except that his previous prostate cancer wasn't the problem. From the treatment he had received, and his history as a heavy social drinker, my guess was sclerosis of the liver ( I was an RN).
He was never admitted to the hospital, but when he finally was too difficult for his wife to care for, someone called Hospice. This was not "in-patient" hospice, but a care-giver and visiting nurse provided in his home.
I had not realized how sick he really was! His poor wife was so grateful for the help. He was dying. She wasn't prepared in any way. The hospice nurse explained the treatment he had received, told her (possibly for the first time) that he was dying. She explained the symptoms she saw of his later impending death, the medication (Morphine, I think, mainly) he was being given and the reason for it, helpful techniques to position him for comfort as well as suggestions of what he might eat or drink.

I didn't know of all this until he finally passed away and I got the phone call. My sister-in-law expressed nothing but gratitude for hospice. She hadn't known of it before (and I didn't realize, myself, how ill he was). She said she felt so helpless and afraid before the hospice people came. She kept saying, "I don't know how I could have made it through this without them!"