Does anyone have experience with Palliative Care?

Ashby,
My late husband was referred to a Palliative Care Specialist. He had Parkinson's Disease along with age and was referred to a Palliative Care specialist. She offered much to him/us. The husband had several more minor health issues, which complicated his life and sense of well-being. The PC specialist worked more comprehensively with him.

Please don't apologize for talking about your medical issues. Personally I am grateful to hear about what others are going through and I am always thankful for people's honesty and willingness to share.
I would encourage you to reach out to your local palliative care program to see about sitting down and asking your questions.
I wish you well and thank you for sharing your story.

I, too, encourage you to seek a Palliative Care Team. The comprehensive treatments and methods focus on your challenges, needs, and quality of life to accomplish your goals. Husbands or spouses journeying, caring, and supporting their spouse with cancer or life-threatening diseases would also find help to understand, and support for coping, as cancer and life-threatening diseases affect both patient and spouse. It is not a cure. For my late husband and me, Palliative Care gave us the gift of time, pain symptom management, and palliative chemotherapy to keep cancer at bay, and all the support to help him accomplish his spoken goals. Was it easy, not always. Joy collided with agony, but our time together was priceless. I hope this is an encouragement to you and others facing difficult health issues.

So well said, @carlaz! This captures palliative care to a tee: "Palliative Care gave us the gift of time, pain symptom management, and palliative chemotherapy to keep cancer at bay, and all the support to help him accomplish his spoken goals. Was it easy, not always. Joy collided with agony, but our time together was priceless."

For many people, the phrase 'palliative care' is frightening. Your words help put the emphasis on "care". Thank you.

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.

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.

patientrevolution.org
I have been exploring this for awhile.

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

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.

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. 🌺