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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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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!"
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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.
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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.
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lealonnie1 Mar 2022
Amazing story, thank you for sharing it!
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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?
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lealonnie1 Mar 2022
My mother's PCP was affiliated with the hospice group and came into the MC to see her for the almost 3 years she lived there. The hospice company also has their own doctor to confer with if needed, but in mom's case, they called her PCP to get consent for meds before writing scripts.
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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.
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lealonnie1 Mar 2022
Thank God. Mom's hospice nurse used a different Medicare category for her too, to get approval "Senile Brain Degeneration". Which was a good thing, too, since she had only 2 months left to live!
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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
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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 .
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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.
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lealonnie1 Mar 2022
What a wonderful thing hospice did for your brother Kate, truly remarkable! Hospice also brought my mom (the queen of falls) a bolster pillow for her bed and afterward, she NEVER fell out of bed again after doing so at least 2x a week! Thank you for sharing such an uplifting story, and God bless your brother and your family.
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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.
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Hospice has been a godsend for my mother. She is in a memory care facility, and also has a mass on her lung. She went to the ER when her oxygen levels dropped, and they sent her home with orders for a hospital bed and oxygen. The care facility and medical supply agency had trouble getting those for her. I think the oxygen was a supply chain issue, and Medicare just kept wanting more and more documentation for the hospital bed. This really concerned me, because when I was with her in the ER it became very clear to me that lying flat worsened the breathing problems. We brought in hospice. The next day she had a hospital bed, a reliable source of oxygen, and more!
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In general terms, hospice is a wonderful service. In specific terms, you need to find the right hospice agency that understands your needs and is compassionate.

My husband is in hospice and it’s been a wonderful experience. It’s another layer of support I need. I recommend asking friends, neighbors, or on here for a good agency. Don’t rely solely on online reviews.

Lastly, Medicare pays for everything.
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My family had a positive experience with hospice at home. My father had a devastating stroke and I asked the doctor about hospice. We used the hospice affiliated with the Catholic hospital he was in. We never had any problems with hospice. They were able to help us with administrating the comfort package and answering our questions. He was in hospice for 12 days before he died.

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.
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Thank you so much for this sharing! I will be starting soon as a Hospice Volunteer, and it is so good to hear these wonderful stories.
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My husband was in Sunrise with dementia on their Memory care floor for just shy of 3 years.
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.
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Maggie61r Mar 2022
My friend's husband is in hospice and somebody called and asked how she was doing and if she needed anything. They had a talk and she convinced my friend to take a day for herself and take care of her own wants & needs for the day. (I've been telling her that for years, but she wouldn't listen to me.) She told me that it has always been her putting her husband first with his medical needs, that it was so nice to be asked how she was doing.

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.
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I had positive experiences with hospice and it’s the best thing you can do if you are terminal. They don’t kill you, they just make the experience of dying more comfortable. Everyone I worked with in hospice, both for my husband who died from a brain tumor and for my dad who died from vascular dementia were very good. One lady in particular assigned to bathing my husband was especially excellent. Somehow as soon as she came in the door she brought peace and comfort with her. She wasn’t in charge the way the nurse was, but you could tell she had a lot of experience working with the dying. She gave me all kinds of tips and tricks to help my husband and she had a great effect on calming my anxiety. Truly an angel. She even stopped by after he passed to see how I was doing. If you have a terminal illness I have come to believe hospice is the best thing you can do. We all want to stay alive of course, but there is something very sacred about the process of dying and I’m not afraid of it because of what I’ve experienced helping my loved ones through it. I would recommend doing hospice as soon as it’s appropriate.
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I think it's important to share positive experiences and to understand we all struggle losing loved ones and sometimes we blame others when it's difficult to accept. That's human. Those who feel "hospice killed my loved one" need to understand that hospice is END OF LIFE care, your loved one is already dying. Hospice is there to help the loved one and the family through the process. I wish every family could feel supported and cared for properly but I realize things can happen to make someone feel differently. I didn't know anything about hospice until my Mom was diagnosed with terminal cancer, and she lived 650 miles away from me. Hospice was a godsend and truly our lifeline through my Mom's short journey. I drove from my state to Mom's 6 times in 5 weeks to care for her while I working. I was not sure of what to do or how I'd get through that time. I received more support from hospice than I did from family. They were there to keep me updated when I'd travel back home to work a few days before going back to care for Mom. They were absolutely amazing, so much so that I ended up working for 3 different hospice companies in the years since, just to be a part of helping other families through these difficult times. Unfortunately things can go wrong but I can honestly say, from my experience with being a family member and also working for hospice, the nurses, CNAs, social workers, chaplains, etc are truly amazing humans. This is not an easy field they've chosen, they connect with their patients and hurt too when they die. They form bonds with families too. As I've said I've worked for hospice myself, I've personally hugged and wiped the tears of hospice staff/coworkers who's hearts broke after losing a patient. Years pass and they will still remember patients who meant so much to them. How special is that to know someone else loved your family member and bonded so closely with them at the end of their life! What many people may not know, hospice staff have weekly meetings to discuss patients/family of patients, any medication changes needed, needs of families, complaints, ways to improve, they mention patients who passed that week and pray for them and their loved ones - and many also hold private memorials, monthly or quarterly, for the staff to also mourn your loved one. They truly do care about your family members. We may see something a certain way, but once we see the bigger picture, we can understand better. And not to be facetious but for anyone who still believes hospice"killed their loved one", they receive funds for keeping them alive and receive nothing after a patient dies, it's in hospice's best interest to have people live longer under their care. I will forever be grateful for our hospice experience, I have and will always recommend hospice to everyone when the time comes. I cannot imagine going through such a heartbreaking time without the care and support hospice provides. I wish everyone to have that comfort because it simply hurts so very much. My Mom has been gone for 15 years and I still miss her, cry, wish for one more hug or cup of coffee together. There is no end to grieving but time definitely helps ease the intensity. Besides recommending hospice, I recommend finding someone you trust to share your grief with, the challenges and pain. You may be surprised by who you can connect with in your sorrow, nearly everyone has experienced a loss. I wish everyone the very best through these difficult times, be gentle with yourself during grief and reach out to others, you are never alone. (My Mom is not the only family member cared for by hospice, she was just my first experience. We've had hospice service for several family members since)
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katepaints Mar 2022
I totally agree with everything you’ve said. One of the best things the hospice nurse did was to explain to our family the death process and how hospice approaches it. One member worried that my brother wasn’t eating. She learned that’s part of the body getting ready to die. Another asked about pain. It was explained to her that he was receiving morphine and Ativan to keep him as comfortable as possible. One writer here on the forum felt hospice killed her parent because they wouldn’t feed her. I wonder if these death processes were explained to them . It was extremely helpful for us.
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My mother had her final brain bleed and was in Hosparus Care in the hospital in Louisville, KY. They were her angels. They took amazing care of her and kept her comfortable with Morphine & Ativan. If we had not elected the meds she would have been miserable. She passed in 7 days peacefully.

Now my father is on Hosparus care at home. He has congestive heart failure and has been in their care for a year. Nurses, Doctors, Volunteers, Chaplain. He has lots of activity. I dont worry about him as much since I live 3 hours away. So thankful for all these heroes!
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Thank you for this truthful and accurate message. I’m a retired nurse and my husband is struggling with severe vascular dementia ( most likely Lewybody ) and when his time is near I will keep him comfortable with hospice care. He’s currently at a veterans health care facility receiving excellent care. I also want to say I’m SO sorry for your loss and I pray for your comfort and peace as you grieve your loved one.💜
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lealonnie1 Mar 2022
Thank you Kate and I am so sorry for your DH & you struggling with his dementia; such a terrible affliction which I HATE with every ounce of my being.
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I've had two relatives in hospice. One experience was just a couple of days, in hospital only, and that didn't go as hoped (but that was due to hospital staff, not hospice). Another relative was in hospice care at my home for nearly 4 months. Hospice really made the difference -- I believe they prolonged her life, and they definitely made it better through compassionate care, regular attendance by doctor and nurse, and excellent medication management. Once a person is terminal, who cares if high doses of a drug damage the kidneys or cause addiction or anything like that; the doctor prescribed her painkillers, appetite stimulants, I don't know what else, to keep her not only pain-free but energetic. They gave me the support I needed to administer the regular doses and to know how to use the emergency supplies. My relative went from hardly eating or moving (after a last-option surgery) to walking with a walker all over the house and having a good appetite. She shopped like a demon and went out to eat frequently, and we had a fun summer of being tourists. She continued to lose weight because the disease was slowly winning, but I would say she truly had quality of life during those months. When the end came, it was very quick.

Hospice also supported me as a caregiver. I had a private counseling session during the time I was being a caregiver and again after it was all over, both of which were helpful.
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Lea many times your words have been a life preserver thrown to me on this godawful journey. Condolences on the loss of your mom, glad she is at peace now, and hope you have some as well. I am glad to hear she/you had a good experience with hospice.
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lealonnie1 Mar 2022
Thank you so much for your kind words Siouxann.
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It flat out sucked. Doctor and Spiritual people were nice
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Katefalc Mar 2022
In what way did it “ suck”??
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Hospice was amazing for my Dad. He had no discomfort and we were able to visit anytime. The facility was beautiful and all of the staff supportive. I think many people have a negative experience with hospice because they don't want to accept their loved one is dying. They blame the staff rather than accepting that death is imminent and hospice is making the passing easier for their loved ones.
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Hospice was amazing for my mom. Nurse, aide, chaplain, social worker, all worked hard to make sure my mom was comfortable. They even sent a 3 woman choir to sing to her during her final days. I wish I'd gotten her out of SNF and on hospice way before I did. I just couldn't find a place to take her in her condition until I found an end of life home in my neighborhood where a care giver couple live. They were caring for only one other resident and had one other care giver. So peaceful. So kind.
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Thank you so much for posting this. Fed up with the negative hospice posts. A lot of people need to know about all the wonderful help, caring, expertise hospice affords to their patients and families.
I hope the positive postings will continue for awhile, just to shine a bright light against the predictable, trolling, negativity of those who think it's clever to do so here.
Considering that hospice is still an option, which means that it works for a lot of people. If it is as "evil" as described, it would not still be here. Of course nothing is perfect, non of us are, there can be problems with anything in life, yet-for me, hospice was great.
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I was very naive about my grandmother's decline at 103yo. It's obvious to me now that hospice was the right choice for her, and should have been her care plan for months before it was implemented. I'm thankful for the kind and knowledgeable home hospice nurses, and for the medication that kept my grandmother more comfortable in her last weeks. Hospice care gave her more dignity in her last month, less pain and distress, and allowed me to have some peaceful moments with her as she was pre-active and then actively dying. No one should suffer unnecessarily once their body has determined it's the end stages. I would hope I get similar compassion when it's my time.
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Anyone who thinks hospice is killing their loved one clearly doesn’t understand what hospice is about. I’ve dealt with three different hospice companies, and even though I ended up firing one, even they didn’t end their first day without being absolutely sure I understood what hospice was and how it worked. I don’t believe any hospice organization doesn’t talk to the family and explain that.

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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Hospice helped me when I knew it would be impossible to care for both my father and mother at home. My father was admitted to in-patient hospice and passed away two months later. He did have bed sores at the end. They were awful, but he had been refusing food and his muscles had contracted. They moved him, but there is only so much that can be done when the patient is immobile and not eating (we refused a feeding tube). He was clean at all times, he was even shaved, his hair was combed. The bed ALWAYS had clean linens. He was not in pain that I could perceive. There is no way I could have helped him transition. It was beyond my abilities. It was a drawn-out death for him, but it afforded me the ability to look after my mom and it afforded him a relatively painfree passing. Thank you to the caregivers of hospice.
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Hospice was an excellent fit for my dad who benefited from care for 1 1/2 years. My personal experience was so profoundly positive that I am making a career change to join Hospice as a nurse.

We enrolled dad in Hospice-at-Home during COVID (ugh); there were staff/volunteer shortages and some program cuts, but that did not affect the quality of care, frequency of visits, or the compassion that dad received. I was dad's 24/7 caregiver & healthcare advocate for 4 1/2 years. Hospice provided me with the resources, education, and support I needed to make dad's end-of-life transition easier. Dad had physician oversight, weekly RN visits, monthly social worker, daily CNA (bathing & dressing), and a chaplain (which gave Dad comfort). I relied on the 24/7 nurse 'hotline' when needed and those consultations were a godsend. Respite care was available if I needed a break. Volunteers called to check on dad and the family. Medicare picked up the cost of medical equipment, a hospital bed, wound care, personal care items, medication.

Sadly, just 4 weeks after dad passed away, my mom required her own urgent admission. She was in Hospice-at-Home care for just 3 days. The Hospice team performed at the top of their game to get her situated quickly, bring medical equipment, and assign the team for at-home visits. I'm grateful that we were assigned the same team who cared for my father. I could depend on them to provide the best care and guidance - every step of the way.
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lealonnie1 Mar 2022
Best of luck on your career change over to hospice nursing; you have my utmost admiration as the empathy & compassion I've witnessed from the hospice staff is second to none.
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My experience with hospice was excellent. I was a caregiver for my mother, with endstage colon cancer for 19 months. My house was built in 1947, end of row home, on the corner. The first level had a direct door right out to the side walk, a nice half bath, finished in old wide plank pine, and as Mom would say "So cozy" and it really was. There was just enough room there for her bed a small couch and her recliner and a nice book case. The side door was a god send, her friends, home care, social worker could pop in and out and not disturb the rest of the house. There were stairs from the kitchen to go down, so if I needed to check up on what was going on, could easily do so. I've described this in detail, to explain how well this worked out when hospice was the next option.
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.
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Our experiences with daddy's hospice were nothing but wonderful and supportive. I played only a 'background' support, giving mom some much needed time off.

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.
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