First things first - I want to treat this subject with the greatest respect and dignity.
If anyone feels comfortable writing about their experience with hospice, I would like to hear from you. If you are a medical professional working in the hospice field, or you experienced hospice services for a loved one - anything you can share will be helpful. Even “bad” experiences are important to me, especially if you can tell me what happened to make it bad. And of course, I would like to hear about the best hospice care/nurse/social worker/chaplain and what made them stand out from the others.
My GF just finished her training in it, and has already had her first client. In fact, I think she’s over there right now.
She’s basically there to provide whatever support is needed. It might be making a meal. It might be doing laundry. It might just be holding her hand for an hour. (As it turns out, it will be a massage.)
From what I’ve seen, most hospice workers have huge hearts and want nothing more than to make people happy.
They were angels of mercy when my father was on his way out fom cancer. It took some time and trouble to get a doctor to do whatever it is that gets a person hospice but when they came in they brought beds, equipment and experience when us family members were lost.
For example, my dad was basically living in his easy chair. He couldn’t get too and from his bedroom, he wanted to sleep sitting up and we weren’t sure about putting a bed in the living room anyhow. Hospice came in, put one of those hospital beds right there where the Lazyboy was - problem solved. They took care of a lot of stuff I don’t even know, or want to know, about.
They provide people to be there when family can’t - that’s a big deal right there. My Mom wasn’t up to taking care of Dad, my sibs and I couldn’t be there all the time - Hospice took care of it.
The first time I ever heard of hospice was when it was pretty new, in 1986. I don’t remember much about the woman except that she was incredibly nice and helpful. Mom was especially thankful for her. Grandma’s husband, normally a “touchy-feely is for wimps” kind of guy, wouldn’t have made it without her.
My hospice experience took place over 2 years ago.
My 83 year old mother, who had been in good health, suddenly had to be rushed to hospital. It was terminal bowel cancer.
She bravely chose to finish her life in a hospice. (We were living in a country town, so the local hospital had a small ward for terminal cases.)
Despite the tragedy, this turned out to be as good as it could be.
Thanks to a local hospice charity, she had a single room with a view. She had TV and a phone. She had pain relief on demand.
The staff were professional and cheerful. They responded quickly if needed and kept Mum comfortable.
Visitors were welcome, and I especially remember two occasions in that last week:
I found Mum playing bridge and gossiping with three of her closest friends
the family stayed with Mum while she planned her own funeral
My father passed away a month later and I needed a year of grief counselling.
However I am incredibly grateful to the hospice for allowing my Mum to pass without pain but with dignity.
I am not a medical professional, but I worked very briefly for Visting Nurses Association; they do a bunch of things, one of which is hospice care. Part of my job involved reviewing hospice files.
I was so impressed by what the hospice workers did and how they did it. The case notes showed how committed and caring the workers were, comforting not only the patient but their loved ones as well. There was such a difference, revealed in the notes, between regular (as in non-hospice) nursing care and hospice care. In hospice, the emphasis is on making the patient comfortable (as much so as possible), both physically and emotionally. It was so touching to see how these people cared for their patients.
I met some of the hospice nurses, and they were some of the finest people I ever met.
I knew after my experience at VNA that I would want hospice care for myself and my family members when the time comes.
Hospice came into our home for the last three weeks or so of my father’s life. I don’t even want to imagine what it would have been like without them. Rose, the hospice nurse, stayed until 3:00 AM some mornings comforting my mother, helping her cook meals for the next day, and did more than I would expect of even the most generous angel.
That’s a job I could never do, but I have more respect for those that can than I could possibly express.
It’s been almost 21 years since my experience with hospice. My mother was terminally ill with lung cancer and congestive heart failure. The first day the hospice nurse came was a Friday, and she determined that my mother needed a hospital bed, but warned that, it being late in the day on a Friday, it may be Monday before we got it. We had it within four hours. She also obtained: a raised toilet seat so my mother could more easily help herself in the bathroom, a shower bench so my mother could have a shower, good pain meds (liquid morphine), all kinds of stuff. On one visit, she brought both my father and I a single rose in a bud vase, because, she said “Not enough people take care of the care givers”. She also helped my mother fill out a DNR order.
When my mother died a couple of months later, hospice sent us a questionnaire asking what they could have done better! I wrote back that the only way they could have made it better would have been to pay us for the privilege of being there.
I, too, make regular donations to hospice. They are one of my favorite charities.
My wife was under home hospice care the last few months of her life. The hospice agency arranged to have a hospital bed delivered to our house, along with all the medical supplies she needed. They instructed me on the care she needed, including how to feed her through the tube that the hospital had inserted into her stomach, and set up a schedule for regular nurse and doctor visits, as well as someone to come over to assist with her personal needs.
They also provided counseling, particularly when she reached the point where I decided that it was time to stop her feeding and let her go. On the Saturday when she died, there was somebody waiting for me when I got home from work (I was already on my way home when I got the call) who stayed with me until the funeral home came to collect her body. The bed and other equipment was picked up that evening, so I didn’t have them there to remind me any longer than necessary.
I heard from them periodically over the next six months, to let me know about their grief counseling services.
We had hospice for my father who was dying of lung cancer (why do I always feel like I have to mention he wasn’t a smoker?). Some parts were good - they arranged for the oxygen unit that he could use. They arranged meds. The not-so-good were that they weren’t all that helpful. My mother’s brother stayed with them to help with things like bathing, and at the very end (the last four days), my mother paid a private duty nurse because all the hopsice nurse did was come in daily and say, “He can’t last the night. Call us when he’s gone.” as he was comatose and gasping for each breath. When my mother called when she thought he’d died, they said, “we left a checklist to verify death. Please go through it and call us back if he’s dead.” He wasn’t, just further down - one day before his death. The last day, when he died, they came, verified he was gone and flushed his pain meds with someone watching to sign off that they weren’t stolen. We found it wasn’t very convenient to die on the weekends.
The hospice nurse we had for my late mother-in-law made things ever so much easier. My husband was pretty much living at her house the last few months to care for her (his mother, not the nurse). The nurse did the stuff others have mentioned, like getting the hospital bed, etc. It was especially helpful the morning she died because the nurse came by and signed the death certificate so there was no need for any hassle with that detail.
I’ve never heard a bad word about hospice. They are a source of strengh and comfort to both the patient and the family. I hope my ex-MIL gets into it soon.
When my SIL was dying she had a full time nurse and hospice came to assist with housework, give a massage, do some shopping, whatever they needed. They provided a bed and also a sleeper/recliner thing that the nurse slept in every night so she could be right there to assist with meds and changes.
Uncle #1 was diagnosed with a brain tumor in his 40’s. He was treated, but eventually he’d had all the radiation and surgery he could take. He opted for comfort care and moved in with my grandparents. They cared for him to the best of their ability, but they were in their 80’s, in poor health themselves, and generally in no condition to provide constant care for a large man with mobility issues and a tendency to wander. That’s when hospice stepped in. Initially, the hospice agency provided home care, mainly help with bathing and dressing (by then, he was partially blind and unsteady on his feet). They also provided respite care so my grandparents could have a break from the constant caretaking. When he could no longer live at home, the hospice agency moved him to a care facility. Hospice allowed my uncle to spend the last part of his life with as much dignity and comfort as his condition allowed. Hospice also allowed my grandparents to have quality time with my uncle as his condition declined and his needs increased.
Uncle #2 was diagnosed with pancreatic cancer in his 60’s. Again, he was treated, but the cancer won in the end. The services provided by the hospice agency enabled him to stay at home throughout much his illness. It took a lot of pressure off his wife and children as well, so they could enjoy the time with him as much as possible.
Grandmother, similar experience, but she was already in an assisted-living facility when she was diagnosed with cancer. Being under hospice care made it easier to get the pain management that she really needed - when everyone frankly admits that you’re dying, doctors don’t fret nearly as much about the risks of opioid drug dependency.
They made the end of my mother’s battle against cancer so much easier, and they provided great relief and respite for my father who was caring for her.
100% recommendation for them when the time comes.
And yes, my only charitable donations are to the cancer wing of the hospital that cared for her, and to the hospice organization.
Too many people wait way, way too long for hospice, I guess because they think that calling the hospice people means giving in to death. I tell you, though, if it weren’t for the hospice people I don’t know what my aunt would have done. My uncle died two years ago from a very nasty brain tumor (first symptom in March, dead in December) and the hospice people were absolute life savers. They were as much help to my aunt as to my uncle. I don’t think she’d have gotten a shower in all those months without them.
A very important part of what they were able to provide is respite care - my aunt had to leave town a few times during his long-and-short-at-the-same-time dying, and once my mom went up there and stayed in their house, but twice he went to respite care and she was able to do things like go to her goddaughter’s wedding with a little less guilt.
I am not a religious person, but if there is a god I think you can see his face in a hospice nurse.
Had a great experience with hospice when my dad died a couple of years ago. They took care of all the practicalities before and after his death. They also had counseling and “grief activities” that were a comfort to my mom. Actually, my only complaint, and this is a mild one, is that they were almost too eager to help with the grieving process. Eventually you have to get on with your life.
My FIL had hospice care in his home during the last two months of his life. They were very kind and supportive. After he passed, they called a minister over (we’re not religious, but he wasn’t overly preachy) to sit with my MIL and give her some comfort. They were all very nice. I think it takes a special breed of person to work in hospice…it’s like a calling.
My mother had pneumonia in early January of this year and died on February 20. I won’t go into all the details here, but suffice to say that when I got out to see her and dad in late January it was obvious to me that she wasn’t going to last much longer.
Because her decline was so rapid we only had hospice for a few weeks. It was such a difference, and I wish we could have had it earlier (but in her case, it wasn’t certain earlier that she wasn’t going to bounce back to something like health). In our case the family was able to provide much of her care (that was my sister the MD and me, mostly) but the hospital bed, the special mattress, the piles of supplies, the pain meds, the anxiety meds, the help with bathing her and changing the bed… all were so very, very valuable. It meant, aside from keeping mom as comfortable as humanly possible, that we had time to be a family and not just drudges on a treadmill of caring for a dying human being. When mom finally died the nurse came over and pronounced her officially dead, contact the police (the police have to come out even for an expected death), disposed of the controlled medications, and took away a lot of stuff (mostly supplies) that otherwise would have been unpleasant reminders that night, they came and took the rest of the stuff away in the next few days.
As it happens, we’re not a particularly religious family, and even those of us that are, aren’t Christian. I think this threw a couple people for a loop, as they weren’t expecting a family of Jews, atheists, and Pagans and were quite sure how to react, but we’re used to that. We didn’t accept the counseling, either, but it was certainly offered.
I wouldn’t hesitate to go the hospice route again for the terminally ill. Dad was hesitant at first, but I remember how helpful it had been when my step-father-in-law was dying, and my sister-the-doctor had had professional experience with them (in fact, she’s applied to work at one) and talked dad into it. Now he says that when the end comes for him, it’s what he wants.
I seriously hope you notified the front office of that organization, (and your insurer or the hospital that recommended them), about their behavior. It is unclear whether you were dealing with a single rogue nurse or a bad office. Deb has seen one or two jerks in her years with hospice, but most of them were either entry level or administrators and they were all flushed out of the system in just a few weeks. However, the organization can’t get rid of problems if they are not notified about the problems.
As the hospice movement gets larger, more jerks and frauds will enter it, sniffing money, but the best way to delay that day is to make a point of challenging them.
This is not merely policy but, perhaps, law. It is a terrible waste, but the feds are so frightened of drug abuse that the agencies are not even permitted to recycle unused drugs. When the patient dies, every Schedule II and Schedule III pill must be destroyed and the rest are destroyed so that there is no chance that anyone hid “heavy” drugs among the “innocent” drugs that would not require being destroyed.