I have a friend who was put on hospice after multiple hospital admissions. He had a slipped disk in neck causing breathing problems, and Doctors finally told his son, after patient had positional breathing problems since a truck hit him in the rear. He wondered for years why he had this problem, and doctors were evasive.
Hospice gave him drugs too frequently and he was too sleepy to eat and drink, and he died quickly at 68, 25 years after being hit by a semi.
I will tell my kids not to put me on hospice, as I am told that decision cannot be reversed, and it is a one way ticket.
Years ago family were given the meds by hospice only for when the pain got too bad, so mom hung on for 6 months or so, and yes it was on God's clock, and not ours.
So, I am most definitely not anti-hospice. That said, my mom has Lewy Body Dementia, which is underdiagnosed. Originally, we didn't know she had it. It was only after adverse reactions to drugs usually included in the hospice home care pack that I started to join the dots.
What I am suggesting here is that perhaps there are occasions, both in hospice or within any other medical organization, where heavy anti-psychotics have precipitated a rapid decline. That started to happen to my mom last year, together with an impacted bowel situation that I was told to administer morphine for to ease her discomfort, in addition to ativan and Haldol. I had to yell loudly, so to speak, to ask for a new approach. The system worked, and the doctor quickly helped me to find the least reactive meds for her. So mom rallied.
And I think people on Hospice with dementia are sometimes less clear cut with their disease progression. From a support group I belong to I have met many caregivers whose loved one has faded and rallied several times while on Hospice, prolonging the experience and sometimes defying the typical markers.
If anything, other LBD families I have connected with are more worried about hospitals and ERs forcing Haldol and Ativan on the person, which can lead to rapid decline or death in some. Hospice teams can be more responsive and respectful.
I suppose what I am getting at is that we are all caring for someone, and know how excruciatingly difficult that is. Bots and trolls aside, can we respect different experiences and concerns, and each learn from each other? Hospices and the people who run them are not perfect. Let's truly listen to each other in case there are issues that need to be supported, examined or better understood by all parties.
It seems you might not be following along so well and I know it's late where you reside, so let me point out that I speculated PUBLICLY ON THIS THREAD if you were possibly the OP ladybug, Right now, that post shows as being an hour ago, but the time will change so you can reference it by looking for my post which starts off: "Nice try Stacy"
I did NOT pm anything to you but I have pm'd with others and I'm clear about which one shared my pm discussion with you. It really doesn't matter though because of my public speculation (referenced above), which you somehow missed when you read it....?
Edit: why are you thanking me. I was responding to the OP ladybug, my answer had nothing to do with you.
I don't think that people that have never dealt with hospice personally can really understand what it involves. I didn't fully get it until I lived it.
My granny was unconscious because she was dying and she was obviously suffering, did hospice drug her to death? Nope, we had to request that she be given enough pain meds to stop the obvious pain she was suffering. The nurses had to get approval from the doctor every single time to give her more pain meds, that time seemed an eternity, she was suffering and they could not just give her more meds.
My sister was dying of cancer, hospice never administered one med. They provided it but, it was up to the family to dose. My sister refused certain drugs and requested others that hospice freely provided for her piece of mind.
Perhaps just being a friend means there was other, more critical information that you were not privileged too. We didn't share everything we knew with friends, it wasn't ours to share.
I believe that hospice is a blessing for many, I believe it is like everything else in life, buyer beware, do your due diligence, ask lots of questions, advocate for your loved one and fire them if they don't live up to the promises.
For anyone dead set against hospice, please give your loved ones the gift of permission to walk away if they can't handle your suffering. It is your choice to not accept comfort care at your life's end but, it is utterly selfish to expect family to be traumatized with your demise, especially if you are suffering and screaming out in pain. That's a lot to live with, so please tell them they can leave you to it and not hear your screams of agony for the rest of their lives. It is what a loving person would do.
I don't think hospice is for everyone, honor that we all get to make our own choices about our care and stop making others wrong because you don't agree or they don't agree with you.
When my mother did home health she had terrific nurses. They were the first ones to tell me about Hospice. One thing that I especially remember was that she said that some people wait too long before they take advantage of hospice services. I think this is true.
There comes a point when we know that there isn’t anything else that can be done medically and it’s more important to choose hospice to receive comfort care.
We were totally satisfied with the care that we received. It puzzles me to hear of others who don’t appreciate their services.
I suppose they are struggling with their loved ones dying. I find by this time the patient has usually accepted their fate and ready to die. Sometimes, it takes family members longer to accept the fact that they are losing people that they love deeply.
The hospice nurse at my brother’s ‘end of life’ facility told my mother that she had to come to terms about her son dying. It was really hard for my mom to deal with. Eventually, she did accept it. I have never lost a child but I feel that must be the toughest loss to endure.
Other people here know all this so you aren't going to get too far with this imagination of yours which you've been trying to propogate for months now!
Just because you pretended you were Milhell doesn't mean other people do the same.
For all we know this post from ladybuglake is actually just ONE MORE OF YOUR MULTIPLE ACCOUNTS!
Or one of your students?!! Lol.
Remember how you posted about having all these students who were AC posters?! You even started a thread to announce that and say "No one messes with your students here" when you came back. --This time as Stacy 122 instead of Stacy022 or similar and before that you were Tacy. AC took down your thread though. That was the day you were using foul language all over the place on the forum.
Why don't you just live your life and deal with your Gert-ghost and stop being obsessed with trying to make me be another forum member who I'm not. Esp since other members here know us.
I'm going to assume you are a real person who just happened to come to this website yesterday afternoon or night to create an account and post about this at the exact time another hospice discussion was taking place on the forum. If it was all coincidental, then please accept my apologies for members here wondering about the legitimacy of your post. I also thought it was unusual when I first saw your newly created thread, but hey... Coincidences can happen.
If it was mere coincidence, then seriously, I'm so sorry for what happened to your friend. Unfortunately this does sometimes happen and obviously you were just an observer so you weren't in a position to stop it or help him. I have first-hand knowledge of a tragic situation where even ONE of the children was not able to change course and save his mother after a hospital wrongly diagnosed her stroke damage and she was sent to a hospice facility less than 24 hours after the stroke, where all food and water was stopped, heavy medications adminstered, etc.
It turned out she wasn't paralyzed on one side and she was able to talk and swallow, so the hospital was wrong. There are many more details which I've told previously but this is not such a friendly place to tell them so I'm not going to repeat them here. Without them, no one would be able to make a full judgment, but even when I did give them, I ended up disappointed to discover the strong hospice advocates on this forum were unmoved and unable to look at what happened on an individual basis.
I don't want to leave you with the wrong impression. This forum is a WONDERFUL place for caregivers to ask questions, swap stories, get and share advice, and support each other during the difficulties of care-giving and loss.
The SINGLE EXCEPTION to this is if you have an issue or concern about hospice. I can speculate on many reasons why and some are not even speculative, but I don't wish to do that publicly because I will be attacked like every single person I have ever seen who isn't happy with hospice is on this support-group-forum. I did a search once of all the posts I was able to find in history here and what I'm explaining is a long-standing tradition--Long before my time because I've only been a member for about 3 mo's.
I feel so bad to say this because there are some REALLY GOOD CARING and KINDHEARTED members here. For some reason just this 1-topic is a taboo subject where no one can find open-mindedness or support in the public threads of the forum.
I'm just telling you how it is. It's only been a week since I was last attacked for urging caution about some end-of-life drugs which were possibly NOT helping a poster's parent as they were intended to.
If you want to reach out to me personally with a private message, (which you can do by clicking on my name above where you will then be taken to my profile page), I'd be happy to communicate with you further.
I've had others tell me there are support and discussion forums on facebook and elsewhere for people who are trying to come to terms with something that happened. I've never checked them out for myself because my parents are still fairly young and hospice isn't something we're facing.
The only reason I learned about this forum and also about it not being a place for this hospice issue you posted yesterday, is because one of my bosses mentioned feeling very bad for a person who lost their mother and posted about it here only to be ridiculed. It was a stranger to my boss but she was baffled about why this person was being treated like that. I didn't have an account here so I wasn't even sure what she was talking about until she read me some of the comments and I felt bad for the person too.
It wasn't until almost a year later when my dad was diagnosed with early-stage Parkinson's that I decided to get an account here, and I can say I've observed the same thing my boss did.
Some people are delusional when it comes to hospice. Hospice patients are dying. They will not recover. Their illness took their life, not hospice.
I doubt if anyone could change their perspective on how wonderful hospice services truly are.
People also should know that not every hospice service is the same. Research is needed to find the best choice for the individual being cared for. If a person isn’t fully satisfied they can switch to another provider or stop altogether.
I have dealt with two different hospice organizations for my brother and mom. They were both good. Some are better than others though.
I am thankful for them, every day.
Yes, it seems suspicious that there are so many anti-hospice posts, lately.
Anti meds, anti hospice, etc.
I have a suspicion that this is a poster who regularly bashes the use of medication in hospice.
This poster already uses three screen names.
The writing style and messages are almost identical.
I certainly don’t want to be a martyr!
Hospice is an improvement over those days.
To many, hospice is a Godsend, and to some who perhaps don't fully comprehend their intent(which is to keep the patient comfortable and pain free in their final days)it is not.
My husband was under hospice care in our home for the last 22 months of his life and I was the one who controlled all of his medications including his pain medications.
And while I was given the option in my husbands final weeks to have him transferred to the hospice home where they could give him stronger medications that would have more than likely taken him sooner than later, I opted to keep him at home where he wanted to die.
But the bottom line was, my husband was dying. PERIOD. Whether he died at home or at the hospice home a few weeks prior he still would have died, just like your friend.
I hope you will find peace in the knowledge that your friend no longer has to suffer and that he is healthy once again on the other side.
Did you have a question or you just wanted to comment about hospice?
Our family was very satisfied with the hospice care that we received. I’m sorry that you had a negative experience.
Not all hospice organizations are the same. It’s good to do research to find one that is suitable for you.
Heres a link to a forum chat for hospice exclusively:
I hired hospice for both my parents, who's diseases killed them, not the hospice drugs which eased their pain. I could have FIRED hospice at any time, which was perfectly understood when I signed up for their services. I've requested their services for myself at the end of my life as well, based on my experience with them. My husband has done the same.
My sympathies on the loss of your friend.
Also, at end of life, it’s common not to eat and drink. The body is shutting down. Chances are your friend didn’t die because of the meds they administered to make him comfortable.
My sympathies for your loss.