Hospice and rookie mistakes

[Anonymous]

Yep, I just kept telling myself, I was making the best decision at the time. It wasn't what I wanted. But putting him through surgery to try to cure stage 4 cancer to prolong his life with dementia, did not seem like the right decision. I wanted my dad back healthy and alive, but that wasn't who he was then. I knew he didn't want to live that way. I am thankful that he passed quickly once hospice started. It sucks, but nothing was going to make him healthy again.

Go easy on yourself.

[Anonymous]

Anonymous wrote:Rehab vs hospice is a severe choice OP. What about skilled nursing?

Skilled nursing, meaning get discharged from the hospital into a place to regain strength? I think that is rehab.

My mom is in independent living so has some services there. The 24/7 caregivers WILL be regulars in rotation, so that is good. It is new to me and to my mom so maybe things will get easier. OP here.

[Anonymous]

Skilled nursing is different from rehab. It's for people who need round the clock care. You can get a referral from the hospital for 30 days after a qualifying admission. Also, Medicare covers at least 30 days and up to 100 days depending on your mom's plan. Hospice can come to a nursing home (called skilled nursing) and treat your mom there. This is a good option if your mom needs more complicated care than the agency people can provide 24/hr a day. It also might be less expensive.

[Anonymous]

Ok. Then what is rehab?

[Anonymous]

Although hospice doesn't cover some meds, the family can still pay out of pocket. My mom had pink eye or something similar and I believe we paid for antibiotics meds to treat that, the hospice dr prescribed it, but medicare wouldn't pay so we did.

I think my main lesson learned is they give atropine in the comfort care bag (end of life meds that you may need to use without a nurse around).

Atropine can decrease the 'death rattle' sounds by drying up mucous. Well, those drops go in the mouth, even though it's traditionally used as eye drops. Wouldn't have helped much used in the eye but I found out right before using.

[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?