Hospice and rookie mistakes

[Anonymous]

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?

[Anonymous]

Just chiming in to say I’m going through the exact same thing. The choices are unfair. I feel so sorry for my mother.

[Anonymous]

I’m curious. Just had a short experience with hospice.

Other than saying the choices aren’t good, what would work for you and your mom?

[Anonymous]

There are no “good” choices at end of life. I’m sorry, it is very difficult. Give yourself grace.

[Anonymous]

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.

[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.

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.

[Anonymous]

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.

[Anonymous]

My MIL was just on hospice (passed away very quickly) but they brought tons of supplies. Maybe ask?

Can you get on a regular schedule so her caregivers are not strangers? Request a group that seem the best return so the family gets to know them. Agreed that hospice does not provide actual care. There is in patient hospice but usually for those very close to end.

[Anonymous]

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.

[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.

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.

[Anonymous]

Hospice visits the patient a few times a week. Not sure why a pp thought they would provide 24/7 coverage? The hospice nurse doesn’t carry unlimited supplies in her vehicle. The items that hospice does provide are ordered and shipped to the patient’s residence.

[Anonymous]

Can you get her into a nursing home where they’re better equipped to handle? I thought hospice provided things so I’d push back on that or maybe find another hospice.

[Anonymous]

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.

This is not true.

[Anonymous]

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.

He lasted 45 days after that.

[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.

This is not true.

+100

To say a human can’t survive for three days without food just proves that PP has never sat with a dying person, which I have done three times now.