Hospice and rookie mistakes

[Anonymous]

My mom had an adjustable bed, so we didn't use a hospital bed but it was KEY that she could elevate her head at times, and her feet at other times. Having the elevated head also helped us when we wanted to move her out of bed.

She also used their lazy boy recliner to sleep in a fair bit, with travel neck pillow, which was really comfortable for her.

Hospice provided a hospital chair (similar but less comfortable than a recliner, feet and head are adjustable), a height adjustable food tray I believe, and a wheelchair too.

My sister did a lot of research before - make sure you know what happens when the time comes, and have plans with a funeral home or similar. We used Direct Cremation in Chantilly, they came and picked her up at 11pm and were so kind and respectful. My sister even knew to have many people (dad) leave the home so they didn't have to see her taken away. That was good.

[Anonymous]

You can buy a twin adjustable bed (head goes up and feet goes up) at any mattress store.

Physical hospice in my part of Maryland is $400 per night. Medicare does not cover the cost. We are in a poor county of Maryland so that is out of reach of most.

[Anonymous]

Anonymous wrote:It’s sad that people can’t just go in dignity once they are in such a bad state. I wish I have that good choice when I am older.

I think some hospitals/care facilities practice “unofficial” euthanasia. My father was at a hospital in NY and we were asked if we wanted them to keep him alive (his prognosis wasn’t good). When we said no and the nurse administered like 5 different injections. He passed like 5 minutes later.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

I’m convinced hospice and palliative care feel their job is to help people die, and do so. Not make their lives more comfortable until they die.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

In Maryland, if you are in assisted living and don’t eat for X days, they say you must be put on hospice. At that point, they pull every medication and that accelerates your death.

My dad was not actively dying. He was given a lethal dose of morphine without permission from the family.

The nurse took it upon herself to attempt to accelerate his death when he had previously been going around in his wheelchair.

Nurses do kill people so you have to be watchful.

We will never do hospice again.

The nurse who killed my dad is still out there.

https://people.com/pa-nurse-accused-killing-patients-confesses-19-other-attempted-murders-8386877

Can you sue? And I mean it, having had my own experience with palliative care that nearly killed my mother

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

In Maryland, if you are in assisted living and don’t eat for X days, they say you must be put on hospice. At that point, they pull every medication and that accelerates your death.

My dad was not actively dying. He was given a lethal dose of morphine without permission from the family.

The nurse took it upon herself to attempt to accelerate his death when he had previously been going around in his wheelchair.

Nurses do kill people so you have to be watchful.

We will never do hospice again.

The nurse who killed my dad is still out there.

https://people.com/pa-nurse-accused-killing-patients-confesses-19-other-attempted-murders-8386877

If you know all this about the nurse who allegedly killed your father, why didn't you report them to the police, prosecutor and licensing board?


In my decade of experience doing hospice work, I've seen a lot of family members who for whatever reason - religiosity, inability to cope with anticipatory grief, anger at the family member, etc. - have been very resistant to medical providers giving the prescribed dose of morphine to their dying loved one to relieve the pain and anguish many experience at end of life. I will never understand why the same people who would readily take their beloved pet to the veterinarian for a quick, painless exit won't provide the same comfort to a human being they claim to love.

JFC. I hope you are no longer doing hospice work.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It’s sad that people can’t just go in dignity once they are in such a bad state. I wish I have that good choice when I am older.

I think some hospitals/care facilities practice “unofficial” euthanasia. My father was at a hospital in NY and we were asked if we wanted them to keep him alive (his prognosis wasn’t good). When we said no and the nurse administered like 5 different injections. He passed like 5 minutes later.

NY and MD. What do they have in common? HMMMM

[Anonymous]

Anonymous wrote:Ok. Then what is rehab?

Rehabilitative care is PT/OT in a setting that usuall provides a bit more care than assisted living. It’s for people who can gain strength and skills to return to assisted or independent living.

Skilled nursing is for people who require 24/7 nursing supervision and are not candidates for rehabilitation.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Ok. Then what is rehab?

Rehabilitative care is PT/OT in a setting that usuall provides a bit more care than assisted living. It’s for people who can gain strength and skills to return to assisted or independent living.

Skilled nursing is for people who require 24/7 nursing supervision and are not candidates for rehabilitation.

When my mom was being discharged from acute hospital care, we were told that rehab was for people who could tolerate 4 hours of therapy a day (but needed more care than could be provided at home) and skilled nursing was for people who needed round the clock care and maybe could do a little maintenance therapy, but not as strenuous as rehab.

[Anonymous]

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

Nobody can force hospice, though. It’s always a choice. Do you mean the facility said it was the only way he could remain there?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

In Maryland, if you are in assisted living and don’t eat for X days, they say you must be put on hospice. At that point, they pull every medication and that accelerates your death.

My dad was not actively dying. He was given a lethal dose of morphine without permission from the family.

The nurse took it upon herself to attempt to accelerate his death when he had previously been going around in his wheelchair.

Nurses do kill people so you have to be watchful.

We will never do hospice again.

The nurse who killed my dad is still out there.

https://people.com/pa-nurse-accused-killing-patients-confesses-19-other-attempted-murders-8386877

If you know all this about the nurse who allegedly killed your father, why didn't you report them to the police, prosecutor and licensing board?


In my decade of experience doing hospice work, I've seen a lot of family members who for whatever reason - religiosity, inability to cope with anticipatory grief, anger at the family member, etc. - have been very resistant to medical providers giving the prescribed dose of morphine to their dying loved one to relieve the pain and anguish many experience at end of life. I will never understand why the same people who would readily take their beloved pet to the veterinarian for a quick, painless exit won't provide the same comfort to a human being they claim to love.

JFC. I hope you are no longer doing hospice work.

Can you enlighten me as to why this is a bad thing? Why do you believe people must suffer to the bitter end even when their quality of life is zero? (I'm talking late stage, close to death, not "I just found out I have alzheimers and want an injection." I can't understand why you want to drag this phase out.

[Anonymous]

My sister insisted on putting my father in home hospice for six months, without my permission or consent. This was a few years ago and he is still alive, so you can see that was a sketch decision. They did very little. Sent a nurse twice a week and a cna who gave him a lousy bed bath. They sucked.

They dismissed him from hospice after six months when he didn’t die. Said he wasn’t sick enough.

They had fired all his doctors so we had no one to prescribe his meds.

They did provide a hospital bed and hoyer lift but took them so we were left scrambling for those items.

I think hospice sucks. I wouldn’t enroll a loved one in it unless they are at the point where they are likely to die in a few weeks or so.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It sucks.

They don’t tell you hospice does very little and you’ll still have to provide 24-7 care.

A nurse decided to give my dad a lethal dose of morphine without telling us and left him alone on a sofa at a memory care unit in Olney. He had stopped eating so they forced us to put him on hospice and also took away all his meds so he was freezing from lack of thyroid medications. Really messed up.

I think hospice is terrible.

I have a friend in elder care; she says a person is dead within 3 days of stopping eating.
The nurse’s act was actually one of compassion as much as it is possible in rehab/hospice.
I am sorry about your dad but he would have lasted maybe one more day if not that.

Np

Your friend is wrong. My father didn't eat for weeks, just had a basic IV, after his stroke. Eventually he regained his ability to eat.

Very different situations. With hydration a person can live for months. Hospice typically does not use iv hydration after a person can no longer swallow. It is part of the dying process for a person who is dying. A person recovering from a stoke, illness, surgery is a different situation.

In Maryland, if you are in assisted living and don’t eat for X days, they say you must be put on hospice. At that point, they pull every medication and that accelerates your death.

My dad was not actively dying. He was given a lethal dose of morphine without permission from the family.

The nurse took it upon herself to attempt to accelerate his death when he had previously been going around in his wheelchair.

Nurses do kill people so you have to be watchful.

We will never do hospice again.

The nurse who killed my dad is still out there.

https://people.com/pa-nurse-accused-killing-patients-confesses-19-other-attempted-murders-8386877

If you know all this about the nurse who allegedly killed your father, why didn't you report them to the police, prosecutor and licensing board?


In my decade of experience doing hospice work, I've seen a lot of family members who for whatever reason - religiosity, inability to cope with anticipatory grief, anger at the family member, etc. - have been very resistant to medical providers giving the prescribed dose of morphine to their dying loved one to relieve the pain and anguish many experience at end of life. I will never understand why the same people who would readily take their beloved pet to the veterinarian for a quick, painless exit won't provide the same comfort to a human being they claim to love.

JFC. I hope you are no longer doing hospice work.

Can you enlighten me as to why this is a bad thing? Why do you believe people must suffer to the bitter end even when their quality of life is zero? (I'm talking late stage, close to death, not "I just found out I have alzheimers and want an injection." I can't understand why you want to drag this phase out.

Because we had people like you nearly kill my mother, thinking she was at her end. Well guess freaking what...we took her back to the hospital and they were disgusted. She is now in assisted living and enjoying herself. The neurologist said she was so drugged up, she almost didn't recover.

[Anonymous]

Anonymous wrote:My sister insisted on putting my father in home hospice for six months, without my permission or consent. This was a few years ago and he is still alive, so you can see that was a sketch decision. They did very little. Sent a nurse twice a week and a cna who gave him a lousy bed bath. They sucked.

They dismissed him from hospice after six months when he didn’t die. Said he wasn’t sick enough.

They had fired all his doctors so we had no one to prescribe his meds.

They did provide a hospital bed and hoyer lift but took them so we were left scrambling for those items.

I think hospice sucks. I wouldn’t enroll a loved one in it unless they are at the point where they are likely to die in a few weeks or so.

Exactly right!!!! Did that to my Mom, too.

[Anonymous]

Anonymous wrote:1. My mom said “no way” to a hospital bed in her room at home. But a hospital bed can be lowered to make it easy to get into, and now I realize I need to switch out her real bed for a hospital bed. Rookie mistake to not have it set up like that before she returned home.

2. I didn’t have gloves, chucks, briefs and all that stuff. I guess I thought hospice nurse would bring them, but she didn’t.

3. I really had three poor choices. One was to have my mom come home (to Independent Living) to 24/7 care and go back to the hospital when she got sick or fell. She refused rehab and I don’t blame her because I think her illness has progressed to the point where she won’t regain her mobility. Bad choice two would be to make her go to rehab where she would have PT/OT in an unfamiliar environment and probably still not get strong enough to return to independent living. Lousy choice three was to enroll her in hospice plus arrange for 24/7 care. Lousy because this means most of the time she is being cared for by strangers. And because hospice feels like it’s basically all still me and my siblings, only one of which lives close to her Independent Living.

So far, does not feel like I chose the right bad choice. She’s not really set up for hospice (wrong bed, lack supplies, 24/7 care by strangers) and I know I’m making more rookie mistakes than just those I’ve mentioned.

What am I missing? What would be helpful?

would be helpful for the reader to have this defined. Not all of us having nursing experience