Does anyone have experience with Palliative Care?

My dad became a quadriplegic at age 58. My mom and I cared for him for the next 17 years. His insurance company kept trying to put him in a nursing facility since it would be cheaper for them. We ultimately took them to court and won. The Judge said the decision was up to my dad. The insurance was ordered not to contact us again regarding this issue. Although my dad didn't have Hospice but my mom did. I agree with @ebtexas55 that the family or healthcare power of attorney has limited powers. I'd only use hospice if no other alternative existed. But care homes, hospitals insurance companies do try to push you around. Be prepared to stick up for your rights and get attorneys involved when necessary.
Take care,
Jake

Becky, I apologize that you were bothered by my post.
I too, was bothered by some at the facility because of the decisions I made on behalf of my mother.
Let me clarify that some of this was during covid.
I declined requests that I know my mom would object to.
The other situation dealt with me being asked if I would consider putting my mom on hospice. I asked them “ What for? Shes not in hospice condition”.
I was then told she would
1) get 2 free baths
2) all her supplies paid for
3) a free wheel chair
Those are “selling” items and none of those were advantageous to contribute to her better health.
In fact, she was already getting 2 baths, had the money for the supplies and her wheelchair had already been replaced.
You see Becky, as I said in my post, my mom was not hospice ready. Her health was ok.
I was approached again 2 months later and was asked if I had reconsidered putting in her hospice. Again, I said no, not at all.
This was disturbing to me as well as to my private nurse that accompanied me.
There was no LEGITIMATE Health reason for my mom to be in hospice care there.
However, it was brought to my attention IF I were to sign my mom up in hospice, I would no longer be able to give any medical directives because i would be relinquishing them to hospice and my authority would be secondary.
With that said, she lived 7 months later without any hospice care and left us with a quick hit of pneumonia.
No hospice needed… just as i believed.

And let me clarify again, If i felt she should or wouldve been in the condition to require hospice, i would've signed her up with Hospice of the Valley.
But that would have been generated by me and Not the facility she was in.
I was there often enough to oversee how she was doing. And she was doing great!

@ebtexas55 I’m a little bothered by your posting. Why do you think that the facility wanted to “strip your legal authority over her”? Is this an experience that you had?

@kellyanne9 I think that you’re right hen it comes caring for the aged, disabled, or those needing palliative care. It’s difficult but we do have to remember that it COSTS money to care for the aged, disabled, and those needing palliative care. My father and mother received hospice care will in their long term care home. Yes, it cost $$. Money to pay salaries, a hospital bed, wheel chairs, frequent nurse visits, and gas to help get them there. Yes, it would be nice for insurance to pay, but would you pay more in premiums just in case you needed it some day?
What would you suggest as a fairer option?

Where do you live? This makes a difference.
Ive gone thru this with my mom in AZ for the past 2.5 years.
Hospice… only in your home. There are few good ones, I can say Hospice of the Valley in Phoenix, Tempe and surrounding are is good.
My dad has hospice in his home. My mom did not utilize hospice in her facility by my choice. The health facility approached me 3 times to consider it. She didn't need it. She wasnt at the dying point. My observation: the facility wanted her on hospice to strip my legal authority over her. I truly believe that was the reason. ( and so did my private nurse who accompanied me for over a year traveling with me to observe her)
My Observation with palliative care is tricky, especially when Hospice gets involved. (Excluding Hospice of the Valley).
Theres a fine line between healthcare and real estate.
If youre buying in to a palliative facility, youre buying care AND renting real estate.
That can get sticky. You dont own the real estate, the company does. Youre Renting it out under the umbrella of Health Care until you die. Thats what its about at this stage in life.

If you have the money to go into Palliative Care but no family or support around you, then you are at their mercy.
I would consider using that money for a live in companion or a companion for 4-8 hours a day. That means they would get things done for you that you can't do yourself. If you have family in another state, consider selling your place if you have one, and live with them OR find a facility near them.
Get them involved.
Hospice, under certain situations can come into your home. They did for my dad for 6 months, then they rightfully dropped him. He went on again about 2-3 years later. After 6 months dropped again. About 2-3 years later, they got involved because they knew his one and inky kidney was shutting down. They told him he had up to 6 months, and they were right. 3 months before he died, we hired a nurse to stay with him.
My mom was alive but 86 and she could not help him. Her strength could not lift him onto the toilet)
His departure was done respectfully, with love and with family and nurse around him. He was in his own home.

After he died. My mom sold the house an moved into a graduated community fa$ilaty. She Bought into the $ystem; private apartment 8 years, assisted living 4 months, then palliative care for 2.5 years.
Not my choice. She chose this route without discussing it with me.
She was diagnosed with dementia and then my Medical Power of Attorney kicked in.
I was flying into Phoenix twice a month for 3-5 days each month.
She lost all her freedom during covid. Thankfully I could still get in to see her.
She realized then she was trapped in the palliative care fa$ilty. She said she never thought she would live this long. (She was 95 then)
Consider:
1) your gains and losses when considering palliative care.
2) family and friends.
3) how you can manage at home.
4) will chores like driving need to be delegated to someone else.
5) ifso, who?
6) if you want to stay in your home, how can you make it happen:
a) financially
b) safety factors
c) managing your money
d) hiring reputable person to oversee your business matters
e) compile a list of medical directives:
POWER of ATTORNEY
PERSONAL REPRESENTATIVE, YOUR AGENT
HOSPITAL DIRECTIVES: DNR

These are just a few.
If you have no family nearby, consider moving to a palliative care facility near them…. Discuss this with your family members.

Hope this helps your decision making.
Its a tough one. That's why its important to Build your community while youre younger, either with neighbors and/or social communities like churches, synagogues, or senior centers.

Blessings to you, today. 🌺

So sorry. So sad. And they want to decrease our benefits. But we all know even when they increase our monthly, we end up further in the hole as part D goes up, deductables go up on everything. My supplement went up $30/month this year and I hit 70 next year so it goes up lots more. Part B goes up. I just had my annual physical and she never touched me but that's what they call your annual. BP, pulse, pulsox (all machines) review of meds. Didn't even listen to my heart or lungs. Medicare annual physical but they will send someone to talk to me about end of life! Increase for next year they predict will be 2.6% which we dont get to keep while aldis pays $19/hr.

Young people think medicare is free. Our SSA benefits are based on what our income was. In 1978, I made 5$\hr as an RN. How do we keep up? Almost nobody made $25,000/year in the 70s.

Anyway. So sorry your friend and people are retiring to die.

I am so sorry, I just had a friend die who should have had more care but you're right what you can afford.

patientrevolution.org
I have been exploring this for awhile.

It saddens me to think that whether it be aging, disabled or the need for palliative care that money and what you can afford comes before caring for the person and their needs and the families. Something needs to change.

Decided to delete but can't.

I felt hopeful to get help medicare will pay for but found out palliative care will still only pay for a bath and remove my only supports from my life. Sounds like you have to have a palliative care dr and at home they give you emotional support. Medicare won't pay for two.

Anyway. I was hopeful you had an answer. If I had Medicaid, I could hsve the world for help. I have medicare/medigap (for which I am grateful) but if I'm not willing to get naked for a bath within minutes of anyone they send, even a 20 yo guy, I can't have anything. I winder if someone said it that way to congress they would understand better what elder care means. But respect older people right.

Aging in place doesn't exist unless you have money to pay for everything. Otherwise, it means ask your kids to help.

Very discouraging. I'm 69. Disabled my whole life but recently fell and need help. Nothing available insurance will cover.