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Does anyone have experience with Palliative Care?

Chronic Pain | Last Active: 7 hours ago | Replies (132)

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@ebtexas55

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. 🌺

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Replies to "Where do you live? This makes a difference. Ive gone thru this with my mom in..."

@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?