Let's share POSITIVE hospice experiences!
At least once a week we seem to read a post here claiming 'Hospice Killed My Mother'.
Let's never forget that Hospice is a CHOICE. They can be fired at any time. Just like taking a LO into a SNF for rehab; if you don't like the SNF, take your LO out of there, like I did in 2019 for my mother. I picked a dreadful SNF, as it turned out, so I got her OUT of there and into a very nice one in short order. I didn't 'have to' leave her in a dreadful place; I had the choice to take her out of there, same goes for Hospice: If I felt they were 'killing' either of my parents, I would have fired them & taken my parents to the hospital for diagnostic testing/treatment, which is always an option.
If hospice is 'killing your LO', WHY are you leaving them under hospice care???????????
I have an idea. Let's share POSITIVE Hospice experiences for a change! I'll start:
Dad was diagnosed with a growing brain tumor in 2015 that was killing him; he was given 3 months to live and hospice was suggested by the ER doctor. Their services began shortly thereafter at the ALF my folks lived at. I did not really like the first nurse assigned to dad's care; so I called the hospice main admin line and asked that she be replaced with someone else; we had a personality conflict. They said SURE and sent out someone else who was terrific. Dad was kept comfortable for the duration of his EOL experience, not 'overmedicated' or like a 'zombie', and passed away in peace & comfort.
My mother was accepted into hospice care on 12/21 even though the nurse was a bit leeriy if she was 'ready'. She was; I knew it so I was pushing for them to accept her; she was in way worse shape than SHE let on. She had a dramatic overnight decline on 2/15/22 and went into bed, in semi-comatose condition. Hospice called me, administered light doses of Ativan every 4 hours, morphine 5 mg a few days later (added to the Ativan) when she showed discomfort upon being moved, and never increased that dosage. The CNA came to bathe her 3x (bed bath) during the week she was bedbound; the nurse came daily; the chaplain 3x, the social worker 3x, and stayed in touch with me the whole time. The chaplain arranged for a Catholic priest to go see mom and administer Sacraments to her as well. Mom passed peacefully & quietly 7 days later. No pain or suffering, and with a peaceful look on her face. EACH time meds were administered to her, hospice conferred with her PCP BEFORE they were given.
Hospice provides an extra level of care to our elders that is worth its weight in gold. Plus, if WE do not want them medicated for their comfort, we simply say NO, and meds are not administered. It's that simple, in reality. But for me, I was more interested in having my parents comfortable than worrying about 5 mg of morphine doses, frankly.
In both cases, hospice was a Godsend to me and to my parents, and I am thankful for their services. They provided both parents with a hospital bed, specialized wheelchairs, cushions, incontinence supplies, medications, all free of charge & billable to Medicare.
What's YOUR positive hospice experience?
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I think that person is a pure troll. I honestly think most of us have had good experiences with hospice, and I believe we have posted them here. I think that people can come and ask and we can tell them, but we won't ever change the mind of someone who is just trolling us. I am so grateful your Mom had a good experience as your journey with her was a long one, and she deserved the care and the peace.
You asked, so here goes. My brother had sepsis. He had two years before been diagnosed with Lewy's but was quite with it when he died, and it had been his wish to beat down deaths door before Lewy's could get him. He did. When the sepsis was completely unresponsive to IV antibiotics, when he was nothing but dying slow of explosive (likely C Diff diarrhea) he begged me to get him home to his ALF rooms to die in peace with hospice. I had to fight the hospitalists tooth and nail as did he, but we did it.
It was such a relief that last week to have him in the gentle kind arms of hospice. Such was our experience before that with out Mom. We had literally to FIGHT the MD who said "I can't tell you she has only 6 months". He was right about that. She only had three weeks. Once we beat back the MDs hospice cared for those I loved, and helped them. My mom was in her 90s. My bro 85. I am 80 and I want to tattoo on my forehead "CALL HOSPICE NOW".
I thank goodness for Hospice. As a nurse. As a human being. As an aging elder who is READY.
That same week I had a CNA call and schedule, the Nurse called.
For the next 2 years and 11 months I had the most wonderful Team of loving, caring, Angels help me care for the Love of my Life!
I learned how to change a bed with someone in it. I learned how to change a brief ("diaper") with him in bed. (It almost never looked as good as when the CNA did it but I did it) I learned how to use a Sit-to-Stand then a Hoyer Lift. I learned how to prevent pressure sores (he never had one!) As he declined I learned what to look for and listen for as his body began to give out. The morning he died Hospice was there to support me, the Nurse made the call to the Funeral Home and they waited for the Funeral Home to come.
The care, support, education that I got from the Hospice Team allowed me to SAFELY care for him in our home.
I honestly think that because of the help I got from Hospice he lived longer than he would have without them. And I know because of Hospice I remained sane.
My four adult children came to be with their Grampy. They wanted to help me in caring for Grampy. They told me to go sleep at night and they would take care of him.
One daughter is an occupational therapist and was able to help with medical and care side.
One son brought his keyboard because my dad wanted to hear "Clair de Lune." He spent hours playing classical music outside my dad's bedroom.
One son would pray the rosary to calm my dad in the middle of the night. Sometimes he would pray 2 rosaries to calm my dad.
One daughter would stay with my dad to keep an eye on him and make sure he was safe.
They were team Grampy. They were there for dad's mind, body and soul. I couldn't have done it without their help.
Dad was kept comfortable and out of pain. That's all he wanted. It was, for me, anyway, a truly spiritual experience, to watch him slowly transition from this world to the next. My little sister struggled as she was not on great terms with daddy when he was dying and he wasn't aware enough of things to have carried on a real conversation.
I find that people who are generally calm and accepting of the inevitable do better with a LO in Hospice. People who are anxious and scared may struggle with what Hospice provides.
For our family? It was a blessing and made dad's passing very sweet and peaceful. For that, I am eternally grateful.
I called in to visit him on a Sunday afternoon in September. 2021. When I arrived, they wanted to put him in the hospital. He was in bed, trying to communicate, was agitated and upset, but unable to say why. I calmed him and said he wasn't going anywhere. I asked the nurse that if they thought he should go to the hospital, perhaps they should call hospice who would take care of his medical needs that Sunrise could not, but the aides would take better care of him because of the shortage of nurses. I thought that hospice would be medically needed for a few days while he recovered.
Monday morning, the doctor approved hospice. That afternoon, the hospice nurse was there to examine him. After the exam, she told me and one of my sons that my husband was in the last stages of life. We were shocked. His body was shutting down. By that evening there was a hospital bed, oxygen and what ever else he needed to make him as comfortable as possible.
Tuesday morning there was a team of hospice people administering to my husband, me and my son. Nurses, Minister, Social worker, and team coordinator from Somerset Co., NJ, were wonderful, caring and compassionate.
My husband died, Thursday morning.
During these past 5 months and as recent as one day this week, I would get calls from one or another of the team, mostly the minister, checking up on me and asking if there is anything I need or what they can do for me. She suggested people who can help make phone calls or run errands.
Since the death was totally unexpected, and quick, the team has been exemplary.
They have been an invaluable source of kindness and reassurance for her while she is going through this. They don't just treat the patient, they also make sure the spouse/family is doing ok.
A one point she was breifly in hospice, but managed to get well enough to opt out. Which, apparantly is not all that uncommon. That initial version of hospice was mostly the nurse visiting her more often, a hospice nurse and not much else. So, she leaves hospice. Then is not qualified for more chemo, due to the blood work results, the cancer is winning. Ok...after more blood work, evaulations, discussions with her care team, it's time again for hospice. We wanted Mom to be at home. Hospice now takes over, only hospice nurses come over, pain management is discussed, end of life changes explained to us, pallititive care, too. Every single person involved was excellent, kind, compassionate, hard working, and a credit to their profession. I did not feel left out of the hospice caregiving loop, had phone numbers to call for help, really liked every single person who ever showed up too. My Mother wanted to die at home, it was a real comfort for her there. Hospice made that happen perfectly. Granting my mother the solace of her choice of where she would want to die.
My mother's decline lasted about 6 weeks, the last week or so she slept most of the time. She always was kept neat and clean by the hospice staff, she never seemed to be in any distress. Sometimes when she was awake, she would be talking to other people (invisible to me) in the room, or smiling. She was on a morphine patch, with injectable option (in my fridge) if the pain became too much. Never needed it.
As the described symptoms of death nearing became apparant, I'd keep checking on her, generally every two hours or so. She passed inbetween that two hour check-quietly, and as she wanted to.
Hospice workers are my heroes, I don't know how they do it, but Mom's care team was amazing. All of this was done through Fox Chase Cancer Center.
hospice absolutely does not kill anyone. They focus on the quality of life, not the quality of life, but they also do not hasten anyone’s death. I fired the one hospice organization that I started with for my dad, because I had the audacity to ask if they had support services for the family. The social worker told me “This is not about you,” and that was my final straw with them. (They also did not return calls promptly.)
otherwise, my experiences with the second hospice company I hired for dad and the one I hired last year for my mom were 100% positive experiences. I am full of admiration for anyone -- especially the nurses -- who works for hospice, because it takes a lot of emotional fortitude to do that job day in and day out and continue to be upbeat, cheerful, and always supportive to both patient and family. They're truly angels on earth.
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