Does anyone have experience with Palliative Care?

Here are a couple of videos where Dr. Maisha Robinson shares information and answers questions on palliative care, including:
- Palliative care does not always mean hospice care.
- Palliative care can be useful for anyone who has a serious or advanced medical condition.
- Palliative care can be provided alongside curative medical treatments.

Dr. Robinson is an Assistant Professor in Neurology and she holds a joint appointment in the Departments of Neurology and Family Medicine at the Mayo Clinic in Jacksonville, FL, where she established a neuropalliative care program and where she serves as the Medical Director of Palliative Medicine.
https://www.facebook.com/watch/?v=10154969792712517

Hi @antillon8084, I'm glad you found this discussion. At Mayo Clinic, and I believe elsewhere, a patient doesn't require multiple referrals from specialists for access to palliative care. A referral can be made by your PCP or a particular specialist like an oncologist, cardiologist, pulmonologist, neurologist, etc depending on the underlying condition that is initiating the referral.

Antillon, do you have experience with palliative care? How did you get referred?

Thanks, Dave. Good suggestions...the stairs are good exercise and good for us, unless they aren't. They got to be a real struggle several years ago when I was first diagnosed with MS and having so much trouble w/balance, walking, picking up my legs/feet. Then, off and on, better and worse depending on my condition. I have fallen down all 14 steps a couple of times, and a few at a time many times...so, now I'm extremely careful, slow, usually one step at a time and use a cane plus railing. What's really fun is getting bottled water or diet coke or anything else up the stairs to my little fridge! Keeping stocked so I can be comfy is a challenge. I have systems when I have no help, but it can be tough. Love the cloth bags I have, for going to the beach or whatever. That's also how I do my laundry,although I have to stop trying to do that on my own. It's hard, it's dangerous for me, it causes me pain, so it's time to have someone help me. Problem: my housekeeper, while good and a dear, isn't always dependable and I can't afford her anymore than now. I'm better, it seems I'm going to be better for a while and may live longer than I thought last year!!! While that's a good thing, it concerns me that my retirement may run low or out! Can't expect any help from my son, disabled himself, so my mind is in chaos.....as Sue so beautifully described it. I think a 'stair chair', installed to sit in and ride up and down safely, costs about $4500 installed. That's more than I want to spend.....and, I'm working on reno of the condo to make it more comfy and up-date it. I have some brain work, real thinking to do, eh? I don't think I'm alone in these concerns. But, I was expecting to live no more than 4 more years! we'll see.....Again, tks for the thoughts.

Colleen, you're wonderful! Tks for this info. I saw her on youtube. It helped me undestand more...actually, Mayo Clinic is built on the palliative care model, isn't it? My doctors are my 'care team'. they share my information it appears they really do! They changed my doctor from one I was scheduled with by my neuro. to one they thought would give me additional help due to his experience and my specific needs. How wonderful is that! Blessings to you....Elizabeth

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

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

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

@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.

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 @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