Does anyone have experience with Palliative Care?

Hi @ashby1947, I'm so glad you were able to connect directly with Dr. Robinson. I'm not sure why your request was considered a self-referral rather than the referral from you PCP. Essentially, it shouldn't make a difference how the referral came in, it is the eligibility criteria that is considered.

Eligibility criteria will differ depending on the state, region and institution. Here is some general guidance:
- How Is Eligibility For Palliative Care Decided? What Procedure Is Followed? https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/Palliative+Care/How+is+eligibility+for+palliative+care+decided_+What+procedure+is+followed_.aspx
- Palliative care: Symptom relief during illness https://www.mayoclinic.org/tests-procedures/palliative-care/in-depth/palliative-care/art-20047525

Sue, might a coordination of care as suggested by other members in this discussion be more akin to what you need?

Hi Colleen - Please see my post from yesterday. I spoke with Dr. Robinson, who was kind, professional, and informative; however, she spoke of pretty well defined criteria for whom they would and would not accept into the palliative care program. She also did not consider the referral from my PCP and referenced me as a self-referral. Perhaps that's because my PCP is not a member of the Mayo staff. I'm sure it's a great program, as, in my experience, all Mayo programs are. But apparently it is not for me. Back to the drawing board! Have a good day. Sue

@trishanna I’m sorry to hear that some of you don’t qualify yet for palliative care. We all need help as we get older! Earlier, I had mentioned geriatric care managers. They are usually masters educated nurses who try to help pull all the details together for their clients. They might be worth investigating. I’m going to see what I can find
https://www.homecarepulse.com/articles/national-association-of-professional-geriatric-care-managers/
https://www.nia.nih.gov/health/what-geriatric-care-manager

I would love a central person to be the REFEREE!!! Dan C

@ashby1947 @ess77 @jakedduck1@trishanna This palliative care conversation is an important one, especially for those of us navigating our corners of the world alone, or separated courtesy of the pandemic, or for whatever reason. I wonder if anyone has looked into their county's Area Agency on Aging, or Senior Services? While some of us may not qualify by age, these people, plus many faith based groups, make an effort to assist those in need. I have heard of small groups who help make a big difference in the lives of those they help serve?
Ginger

Hello, Sue. Well, now you have an answer. No matter what it is, it's always to good to get one! I'm sorry that's not the solution you need right now. I took something quite different from her video, so I'm a bit surprised. May I ask you what you do need? The specific kind of service? I need help maintaining my home, better. I can do some things some times, but nothing can I do just because it needs doing.....make sense? Housekeeper is good, but not as dependable as I'd like. I think I need a 'helper'. Someone to help with things I can't or shouldn't do, like get things up and down stairs! Laundry! I put in a load of laundry and by the time it's ready to remove it, I'm too tired or in too much pain and have to leave it......sometimes overnight or for a couple days until I am better. Not good. I want to hang my personal clothing upstairs in the 2 bathrooms, but have to get wet clothes up there! THen, hang them up! Since my finance died several years ago, I've gone downhill some, gotten behind on the condo reno that he and I were doing together, etc. He had a home in Mandarin....I hope you like that area....I lived there for a few years and loved it. My condo is in SS, San Jose/Baymeadows area. Had we married before he died, I'd be living in his home we shared for a bit. It backs up to a creek, with woods, houses nearby but hidden by the trees. We enjoyed it, but life changes and moves on it's way. Guess I'm working on thinking and plannning, still. Let me know how you are, what you need. Last year, I spoke with a social worker at Mayo.....think I'll contact her again and see what she has to offer. She has some good contacts that may help. Let you know. Blessings, Elizabeth

@ashby1947. This whole conversation on Palliative Care has been most helpful. I, too, would not be eligible for such care right now, and yet I'm trying to juggle receiving care from about ten physicians - including surgeons and specialists, physician assistants, etc., sometimes overlapping or contradicting. Would there were a service for us.

Well I still don’t get it. I didn’t know I was that dense but apparently I am.
Could someone explain what criteria have to be met to qualify for Mayo Clinic Palliative care
Thank you,
Jake

Hello everyone who has contributed to this communication. I've enjoyed your comments, support, pain, and hope. I wanted to let you know that my PCP did refer me to Mayo Palliative Care. I spoke to the Dr. director of the program, and she explained that I do not fit their criteria for the program. They work with primarily people with cancer or other end of life issues. She was very thoughtful and kind. So, I'm still exploring optionsd and working with my specialists. I hope this is a good day for you! Sue

Yes, Merry, this makes a lot of sense. Long time overdue! I have no misunderstanding, just working through in my mind and life what I want/need and where I can best get what I need. So far, Mayo Jacksonville, is providing me wonderful care, 360 degrees. They are currently offering me palliative care within their system of service, so at this point, I need someone to help me with my condo redo!!! Sounds like you had a tough time and got some good advice/care. Blessings, Elizabeth