Has anyone else here felt threatened by hospice?
The hospice nurses in our house have been menacing and pushy and aggressive.
They pretend to be nice and I can see through it.
The reason I brought my loved one home is so we could spend time together before I lose him and they have no right to take that away from me.
They're invading my privacy.
I'm sick of their propaganda about "helping him on his journey" and listening to long-winded lectures that insult my intelligence.
It does no good to have someone be knowledgable about drugs and dying when they just want power and control.
They're hell-bent to push morphine on him.
We had not tried the dosage on the bottle yet but they insisted on upping the dosage. They made it really obvious that they're using drugs to put him to sleep and kill him.
Hospice should not be acting like demonic policemen who try to rush your loved ones into death.
The emotional and spiritual support they claim to give is not there.
They're like drug pushers off the street who don't understand my right to privacy in my home or our right to have private time before they start being in a big hurry to kill him.
I feel like they're a terrible threat to my welfare. The fact that their own family members have died does not give me any reason to trust them.
I resent being treated like I'm just another client and I see no way to get away from them. The last time I felt this helpless was decades ago when I was stuck living with people on drugs and they were demanding their own way.
I do not have the ability to stand up to them and my family and friends are not able to help.
You last wrote us this, your post, in May.
Can you update us as to how things are going for you now?
I cannot find any responses from you to the good advice on this thread, and am wondering how everything is for you and for your loved one.
1) you don’t have a right to privacy in your own home when you willingly allowed caregivers in your home.
2) hospice is not there often. They are not invading your privacy and they are not demonic policemen who are rushing your loved one into death.
3) your LO is an alcoholic so is likely withdrawing and has DTs and terminal restlessness. The morphine isn’t to kill him. The morphine is to help him not die from the DTs and to make him more comfortable.
4) You are interfering with the morphine dose apparently, as you admit they aren’t even giving him the full prescribed amount.
5) an intelligent person who is dealing with an impending overwhelming loss likely will react emotionally. It seems to me that the hospice workers are reminding you what processes are happening with your LO who is at the meeting points of the end of his life and addiction.
6) your loved one is dying. You know this.
7) you have the right to change hospice companies if you don’t like this one. Maybe you will do better with a different company.
My husband was recently hospitalized and he was approaching the end of his life. His doctor felt he should be placed in an inpatient hospice facility. After much persuation, my sons and I finally agreed. The hospice facility was like a beautiful upscale hotel. My husband's care was outstanding. He passed away peacefully in this beautiful facility.
My view of hospice has changed. Not all hospice facilities are created equally.
Can you give concrete examples of what else?
How old is your LO? What is the diagnosis? I’d like to get a clearer picture.
Best case scenario, they are just trying to make the point that there should be no reason for the patient to suffer. Did you disagree with the decision to bring in hospice? Perhaps they sense your resistance and are pushing back (which I consider inappropriate, but I suppose is human nature).
I agree with those who say dismiss the hospice provider if you’re not happy with their service.
I don't understand the invading of privacy. An aide is there maybe 3x a week for bathing. A nurse maybe 2 or 3x. Both not staying more than an hour.
Nurses can tell when someone is in pain by taking a clients Blood Pressure. You are the one who administers the Morphine. You LO says whether he feels he needs it or not. Morphine eases pain and breathing. Maybe the Nurse is trying to tell u ur LO is in pain. I understand that you want him awake but he may be in so much pain its better to allow him to sleep thru it. This maybe what the Nurse is trying to explain. They don't give you enough morphine that it will kill ur LO. Its part of comfort care. The whole purpose of Hospice is for a person to be comfortable and pain free so their death is peaceful.
Hospice has services you can take advantage of. Maybe they can send a clergy or a social worker for you to talk to. You tell them how you feel. Are you doing this alone? If so, maybe you need a break and an aide can stay longer so you can get out of the house.
You are at the tail end of a very long and sad journey. No doubt your nerves are fried, I am so sorry that your loved one is dying and you feel so helpless with their care.
I am wondering if they are giving morphine to help with the alcohol withdrawal, because you cannot drink everyday and not have some problems stopping cold turkey.
I assume you can't change hospice or intervene in their treatment because you are not the POA, I saw this with my sister, I had no word with hospice, my husband was POA and he was the only one they would listen to besides my sister.
I hate morphine, I think it is detrimental to many and I personally have a terrible allergic reaction and my sister refused it, she knew she couldn't tolerate it safely and just said no. Hospice did provide her with an alternative opioid to help her with her pain.
Encourage your loved one to tell the nurse and whomever is their POA what their wishes are, because this time is all about them and nobody else.
May The Lord give you strength and courage for this trying time. May HE help you to be accepting of whatever your loved one wants for their eol.
Big hugs! This is so hard for those left behind.
As others have said, consider changing hospice provider if you are really unhappy. But when you talk with another provider, be sure to tell them your expectations, so they can evaluate whether it would be a fit.
Also, consider private palliative care as an alternative.
Best to you and your mom.
Can you expand on why you think that getting a new agency would create more problems?
And certainly, if you are not happy with Hospice's counseling services (which I guess of necessity revolve around the dying process of the loved one) you should and can seek out a licensed social worker for more general counseling and support during this very fraught time.
((((hugs))))))
Mind you, your relative will suffer, but if you're so hell-bent on irrationally channeling your grief and anger at the nurses to the extent that you (not they) are a threat, then you should either cancel hospice or remove yourself from the situation so your loved one does not suffer.
Keep in mind, YOU are not the client. Your LO is. Their job is to make his existence as comfortable as possible and appears you're interfering with that. They do offer support to family as well, but you are not the reason they're there.
Hospice does not kill people. If the client is dead sooner than need be, they don't get paid. That's a mighty poor way of doing business.
If you have the authority to hire and fire the hospice provider, then you can contact another company, and they'll take over. They'll arrange with the new company for a seamless changeover, as the old company will have to take all the medical equipment out and the new one will bring in the the replacements.
I did this with my dad when I fired the first hospice company, and it worked perfectly. This might work for your situation but only IF you realize that hospice isn't trying to kill anyone, and they know the doses of morphine prescribed aren't dangerous.
Either you're on board as a member of his care team, or you'll become the entire care team. It's up to him if he's competent to make that decision, or you if you're the decision maker, but I do hope you have his best interests in mind and don't want him to struggle to breathe or be in pain.
I hope that you don’t feel as if we are criticizing you too harshly. I promise that everyone who has posted on your thread has compassion for anyone who has a loved one who is receiving hospice care.
How are you doing? Have you read any of the responses? How is your loved one doing?
I don’t know what you will end up doing. It’s important to discuss your concerns with your hospice provider.
Please don’t bottle up your feelings. You’re going through enough by watching your loved one in this situation.
You don’t have to explain anything about your loved one’s condition if it is too tough to talk about, I would just like to say that if you would like to tell us more about your situation we are happy to listen.
Wishing you peace during this difficult time in your life.
My husband was under hospice care in our home for the last 22 months of his life and while they aggravated the living shit out of me sometimes, their sole purpose was to help keep my husband comfortable in his final months, and supply whatever was needed to do so.
I was the one who had to give him his medications, and if there was something they wanted to give him and I didn't see the need for it, I just spoke up and said thanks but no thanks, as I had the final say in everything they did or didn't do.
If you don't want your loved getting any of the medications, including morphine then just don't give it to him. The hospice nurses DO NOT give any of the medications in an in-home setting. You do.
But if your loved one is showing visible signs of being in pain I certainly hope that you won't withhold any of the pain medications from him, as the dying process can be very painful, especially as his organs start to shut down.
Also please know that if you're not happy with this hospice agency there are plenty more out there to choose from, so you don't have to settle.
You do have a say in all of this, so quit letting these folks who are only trying to help you and him intimidate you. You understand that someone can only intimidate you if you let them right?
So find your voice and your balls(yes even if you're female)and start taking control of this situation, so your loved one can truly die in peace, and you can have peace along this journey as well.
The point of hospice is to provide comfort at the point where the individual has medical issues that necessitate the need for pain and calming medications. Otherwise why would they require hospice? Who suggested this hospice company to you? You need to find the ability within yourself to advocate for your loved one. What is their diagnosis? Medicare would not be covering the cost if there was not the need for hospice.
Your post seems a bit one sided. We are not aware of specifics regarding your loved one. Instead of being so unhappy why don't you try another company. I was always kept appraised of my mother's vitals. In the end she went a bit quicker but deep down she may have preferred that as she never wanted to discuss death. This hospice company has had follow up calls and literature sent to me. They told me they are available to me for 1 year after my mother's passing. I couldn't have wished for a better experience as a hospice provider.
I am a bit surprised by your comments. Please explain why you feel that hospice is invading your privacy. You signed an agreement with their company to do a job. They are doing the job that they were hired to do.
Hospice nurses aren’t angels of death that push death onto people. A person who signs up for hospice is seriously ill or they wouldn’t be approved for the service.
I was truly grateful that drugs were available for my mom during her final time on this earth. Just think about how many people have died in pain because they weren’t signed up with a hospice provider.
Hospice provides counseling for the entire family. The social worker that we had was terrific. I suggest that you contact the social worker and discuss how you feel with them. Clergy is also available.
I find it interesting that don’t mention how your loved one feels about the hospice staff and the care they are receiving. How are they doing? Are they resting peacefully? If they are, please be grateful for the care they are receiving from the staff.
Hospice nurses are some of the most compassionate people on this earth.
They are extremely aware of the signs of death. Please treat them with respect and trust their judgement to determine how much medication is needed. They are trained to care for the dying.
If you aren’t satisfied please look for a new hospice provider.
I know that it’s hard to lose a loved one. I believe the most loving thing that you can do for them now is to allow them to die peacefully. Isn’t that more important than having privacy with your loved one? Can’t you share your loved one with hospice in order for them to receive the proper care?
I’m sorry to be so blunt but these final days should only be about your loved one’s comfort and care.
Wishing you and your loved one peace during this difficult time of transitioning.
I hope that your hospice staff will be able to provide the best care in spite of your resentment and feeling as if they are intruding. Please try to welcome them into your home to assist your loved one to die peacefully.
That is certainly possible which is why I told her to switch to another provider if she wasn’t satisfied.
You are correct in pointing out that not all organizations provide the same level of care and support.
Still, I have no idea why she would consider their services as being an intrusion on her privacy. She hired them to do a job. I would be grateful that they were there to help and I would allow them to do the job they were hired to do.
She also mentioned that they said that they wanted to help her loved one along on their journey. This conveys a message of compassion.
If she would like to have personal time with her loved one, she should politely tell them that she would like to have some time alone with them after they have taken care of his/her needs.
Not to mention they are not administering drugs in your home......you are.
If you feel so strongly that hospice is a bunch of drug pushers and such, why would you not fire them? You are under no obligation to continue services you do not want or trust!
You have the ability to stand up to any provider who's providing services you do not want. I suggest you do just that!
The client is in charge of their care. Morphine is used for pain and ease of breathing. If ur LO does not need it then they can refuse it. Talk to the Hospice supervisor and tell them ur complaints.
Did your loved one ask for Hospice care?
Do you understand that Hospice is end of life care, and that you need not have Hospice care at all if you do not wish it?
If you and your loved one do not wish to have hospice care there is no reason whatsoever that you must continue with their care.