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.

Ok. Then what is rehab?

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 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.

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.

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

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

Was going to say the same. It’s bad no matter what. Good deaths are very rare, I have come to realize.

I think you made the right call on rehab, at least. My uncle as there after stroke and they just kept shuttling him back and forth to the emergency room. He was miserable. And if he refused therapy three times they kick them out. It was unnecessarily cruel.

Tip 1: There are a lot of hospices in this area, some nonprofit and some for profit. You can fire your hospice and find another one if you are not satisfied. Some have better reviews than others. That being said, they don't provide 24/7 care except for extreme circumstances where someone may need to be in a short term hospice (Capital Caring has one at Sibley Hospital). Some hospices even offer massages and biweekly bathing. I am really surprised because I thought at a bare minimum you would get a hospital bed, oxygen, inflatable mattress, incontinence supplies, a care kit with pain/anxiety meds, nursing visits including a 24/7 call line, etc?

Tip 2: You can disenroll from hospice at any time, and then enroll again later. The intent of hospice is to provide an alternative for situations where someone has a terminal illness and the patient and/or family no longer can or wants to seek treatment. I have never heard of hospice being forced on anyone. There is a lot of paperwork you have to fill out to even enroll in it and families/patients have to understand what it entails. When someone moves to hospice, they go off all preventive meds and the focus of care becomes comfort/easing death. That can be hard because you are saying no to things like IV antibiotics, surgery, IV hydration, feeding tubes, heart medications, etc. You can only enroll in it if a doctor says you have 6 months left to live.

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.

OP, I'm sorry your family is having such a hard time with hospice care.

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?

This is the trick. They say no way and you have to find a way to get them to do things that need to be done anyway. Not saying it's easy at all, for the parent or you. These things represent to the parent an irreversible decline and march toward dying. My heart goes out to you. It's very difficult to have a parent who is resisting every step and I have sworn I will never do this to my own kids. We'll see I guess.

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

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.

Your friend must not have much experience with hospice care - I just spent 8 years doing it, and my last patient survived three weeks after she stopped taking food or any water besides us wetting her mouth with sponges. She was 96 years old and had suffered from CHF for 30 years - she'd stopped taking her meds for those three weeks, too. The human body is devastatingly resilient when people want to die in their minds but their bodies don't cooperate.

My father was recently in hospice. OP is correct and not many people realize that hospice is a Medicare program and does not provide much. It's coordinated nurse care where they handle and provide meds and that's it. It is not someone to stay with the person.

Some states have hopsice homes that are free to the patient and family. They are nonprofits that are typically run by a nurse who is paid through donations and fundraising and then staffed 24-7 by trained volunteers and possibly a paid overnight person. The Medicare hopsice nurses than have a relationship with the hopsice home and come through regularly to administer meds, etc. Families provide all the food. It is a great option. It is typically in a house that has been converted for this purpose but still feels like a house. Very few patients.

If you can afford it, there are also more institutional hospice care settings (a wing of a nursing home or independent living, etc.)

In general, with an elderly parent, you have to be thinking several months ahead all the time of their likely next phase and trying to get the pieces lined up for when the crisis moment hits. There really is very little time for catching your breath it feels like. My best advice is research and anticipate.