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Does anyone have experience with Palliative Care?

Posted by ashby1947 @ashby1947, Dec 11, 2020

Hello Everybody - If you have had experience with Palliative Care, I would truly appreciate hearing about it. What were your medical issues? What did your Care Team do? Did it work for you? I'm a 73 y.o. woman with multiply medical problems, most of which are severe: uncontrolled BP (on many medications which create their own problems); dizziness and lightheadedness; Hx of atrial fibrillation and supraventicular tachyicardia; stomach pain daily 8 or 9 on scale (this is recent and I'm not sure tx for heart burn is correct) and all the accompanying issues of no appetite, weight loss, constant nausea; diplopia which affects balance and self-confidence; lumbar stenosis; dry eye syndrome; and other. Sorry, don't mean to be tedious. The reason I mention all these is that dealing with all of them, every day, is making me exhausted and depleted physically, mentally, emotionally, and spiritually. My husband is great; however, this obviously affects him. I am barely able to accomplish activities of daily living, and recently I have asked him to drive me because I don't feel confident on my own.

I know that hospice care is for those with 6 mos or fewer to live. What I've read about Palliative Care mostly talks about care for people with one significant issue - cancer, heart disease, kidney failure. I wonder if I would even qualify since I have multiply problems. I have very good physicians and medical care here in Jacksonville. But they are each specialists. You know how it goes - no one is dealing with how they all interact and the compound effect on me. I have a long session scheduled with my PCP in a few days. He seems to deal only with the presenting problem.

Any thoughts or experiences you have had would be welcome! Hope this is a good day, Sue

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deek15redpeppers | @deek15redpeppers | Aug 14, 2021
In reply to @sueinmn "Ah, the urge to "get it done". I had an "aha" moment once with my Mom..." + (show)
@sueinmn

Ah, the urge to "get it done". I had an "aha" moment once with my Mom in the grocery store - to her it was an outing, to me it was an errand.

It was a matter of perspective. I decided to make it an outing for myself too. I watched people. I looked at products on the tops shelves in each aisle - you know, the odd stuff like specialty condiments, artichoke hearts and imported cookies.

Interestingly, I came out of the store relaxed, not impatient like I usually was at the end of one of our grocery trips. By that time in her life, enticing her to eat was not easy. So the next time we went to a local specialty grocery and made it an adventure. Sure, the staple items cost a bit more, but we found a few things she would eat, and we enjoyed the journey.

Caregiving changed my perception of many aspects of life. Did you know a McDonalds' Filet'o'Fish sandwich could be a treat if you weren't able to drive up and get one whenever you wanted it?

Sue

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Thank you Sue! What good advice. I will try to remember your ideas next time we're out. You are right - for me it was an errand, but for my spouse it was an outing, which she hasn't had a lot of lately. As she said, I have never spent an hour in a grocery store in my life! I grew up with a dad who said "First you have to need it, then it has to go on sale, then you can buy it" and I think a lot like he did!

Dee

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deek15redpeppers | @deek15redpeppers | Feb 7, 2022

We use Mayo Rochester outpatient Palliative Care for my spouse who has metastatic renal cell cancer and multiple
comorbidities. The team is wonderful, as is the inpatient team. They consult with oncology and other specialties when needed and order all her controlled substance medications. We can have virtual appointments with physicians and social workers when it is not convenient to come in person. When we have a crisis, they do an excellent job of trialing and suggesting what is best to do.I have never met a team of such caring knowledgeable people. Good luck. Just ask your PCP for a referral.

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joybo99 | @joybo99 | Mar 30 12:42pm

I've been seeking similar information with no success.
Medical history aside. I'm fairly sure I qualify and have even contacted my insurance company for starters.
Otherwise no clue where to begin.
Reaching out on social media, Not ready For detailed conversation with family.
Any updates as of Apr 1, 2024?
Thanks for any advice you may provide

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1 reply
joybo99 | @joybo99 | Mar 30 7:21pm

Following your inquiry & Exploring this option for myself.
I checked with my insurance company Without success.
Today I wrote a portal message to my main specialist who I'll see in July. I assume I am eligible but don't know if it's appropriate for me yet.
Age 70, I live alone with 40- year history of chronic Debilitating illness.
Feel free to share any info you might receive? Thank you.
JS
Atlanta.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 3 9:16pm
In reply to @joybo99 "I've been seeking similar information with no success. Medical history aside. I'm fairly sure I qualify..." + (show)
@joybo99

I've been seeking similar information with no success.
Medical history aside. I'm fairly sure I qualify and have even contacted my insurance company for starters.
Otherwise no clue where to begin.
Reaching out on social media, Not ready For detailed conversation with family.
Any updates as of Apr 1, 2024?
Thanks for any advice you may provide

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Hi @joybo99, here is more information about palliative care at Mayo Clinic
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
and
https://www.mayoclinic.org/tests-procedures/palliative-care/care-at-mayo-clinic/pcc-20384639
I'm not sure if you are a patient at Mayo Clinic or not. But wherever you get care, a good place to begin might be to talk with a social worker and ask about palliative care options available to you.

You mention that you're not ready for detailed conversation with family. Are you referring to those tough end of life conversations?

REPLY
jenatsky | @jenatsky | Apr 12 12:29pm
In reply to @joybo99 "Following your inquiry & Exploring this option for myself. I checked with my insurance company Without..." + (show)
@joybo99

Following your inquiry & Exploring this option for myself.
I checked with my insurance company Without success.
Today I wrote a portal message to my main specialist who I'll see in July. I assume I am eligible but don't know if it's appropriate for me yet.
Age 70, I live alone with 40- year history of chronic Debilitating illness.
Feel free to share any info you might receive? Thank you.
JS
Atlanta.

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@joybo99 Medicare is available to a disabled person before age 65 if they are deemed disabled by a disability judge. You are of Medicare age and a palliative care specialists might be available to you. I’m 72 and have had a bad back since 1988 after falling down stairs from an earthquake while living in California. Had surgery in 1990 and on SSD until 1996 and back to work. I now have terrible spinal OA with some minor joint involvement. But I’m a walker and exercise nut following my PT exercise program. I refuse to give in this soon. There is hope and I hope you can see some light?

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1 reply
phylbaysdenm | @phylbaysdenm | Apr 12 12:52pm

Good afternoon,
I am a retired RN and I worked with Home Health and Hospice most of my career. We also worked with a Palliative Care Team. They are wonderful and will definitely help you manage your symptoms. I retired a few years ago and at that time a few insurance companies were covering the program so there might be more now. If they weren’t covering sometimes we would see the patients under Medicare Home Care (if they met the criteria) and assist them in this way. Home Health sometimes has access to palliative care doctors. Either way have your primary doctor refer you to a social worker that can help you navigate the system. Good luck to you and I hope everything goes well for you!

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kfc1 | @kfc1 | Apr 12 1:15pm

You are a 73 yr old woman dealing with severe pain from many different things, you would definitely qualify for palliative care, the sooner the better. God bless you and Happy Healing 🙏🏻

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pattyspmith | @pattyspmith | Apr 12 7:20pm

You have been told this before I am sure but try to remember the most important thing to do, is stay in touch, you are not a bother, even the little things are important.
I won't go into my illnesses, but take my word for it. I do know.
Plus be patient with them.

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joybo99 | @joybo99 | Apr 12 7:39pm
In reply to @jenatsky "@joybo99 Medicare is available to a disabled person before age 65 if they are deemed disabled..." + (show)
@jenatsky

@joybo99 Medicare is available to a disabled person before age 65 if they are deemed disabled by a disability judge. You are of Medicare age and a palliative care specialists might be available to you. I’m 72 and have had a bad back since 1988 after falling down stairs from an earthquake while living in California. Had surgery in 1990 and on SSD until 1996 and back to work. I now have terrible spinal OA with some minor joint involvement. But I’m a walker and exercise nut following my PT exercise program. I refuse to give in this soon. There is hope and I hope you can see some light?

Jump to this post

Thank you for your kind response. I have been on social security disability since age 55 (Multiple Sclerosis, fibro, more.)
I will be discussing P. Care option with my neurologist in July.
A number of symptoms prevent me from pursuing my own love of walking & exercise.
I wish you well with your own therapy and again, Thank you for responding.

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