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

@Erinmfs

I see, I didn't mean to mis-speak, delete my false information if needed! My experience was that my father was kept comfortable in a hospice. But hospice workers told me that he could stay 6 months with medicare hospice services, and then go home. Thinking back, the hospice workers didn't use the term palliative care with me , maybe I heard that term in assisted living?

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@Erinmfs– Nothing to worry about.

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@jakedduck1

Apparently I don’t understand what palliative care is. I always thought it was pretty much taking care of your loved ones at home. My dad was paralyzed from the neck down for 17 years and my mom and I took care of him during that time. In the end he developed cancer which is what he died from. We continued to take care of him during that time as well, both at home and in the hospital. He never had hospice services. Then I took care of my mother who ended up being bedridden and died from heart disease. She had hospice at the end.
Thank you,
Jake

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@jakedduck1 Your posts as you have related the care your and your mom gave to your dad, and later the care you gave to your mom, certainly show the loving and challenging relationship. Remember, hospice care did not end when your mother passed. It seems all hospice groups have family services for use after a patient no longer needs them. I recall the local group where I lived extended services to me after my dad passed, even though we had used a hospice 400 miles away. It was comforting to know they supported all phases.
Ginger

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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

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@antillon8084

Too bad I just saw this in Dec 2020 but Palliative care is definitely for you. You have many issues that interfere with daily living. Each specialist needs to input into request for Palliative care. Everyone needs to see the WHOLE picture…

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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?

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@davej

Houses with stairs might keep people more active and in better shape. But if that gets to much look into putting in a stair climbing system or a personal elevator I understand they are not that expensive good luck dave

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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.

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@colleenyoung

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

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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

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@merpreb

@becsbuddy– These are really wonderful tips Becky.

@ashby1947 and @ess77– I think that there might be confusion as to what palliative care is and how it's initiated. And I'm sure that this is different for each hospital setting. Interestingly, to me, palliative care was an offshoot of hospice care as a result, in the early 1900s, of seeing people with cancer who were suffering and in great pain, but they weren't dying! As time went by doctors and nurses and nuns were looking at new ways of managing pain, not wanting hospice to be just for the dying. And as time went on changes were made in gaps for treatments for the whole being, hence, Palliative care.

Palliative care should start with your PCP and branch out from there as you build your team of doctors. They will help you or make recommendations for other specialists if need be for pain management, spiritual guidance, emotional support, and even child care. So it may not be a separate department, per see, but referrals to see others who will help care for your needs other than radiologists, surgeons, and oncologists.

Earlier this year I had a very down to earth conversation with my oncologist as a result of my own misunderstanding of what was going on with my cancer. I was very depressed and scared and I worried about everything. Jennifer, my oncologist, explained everything to me and recommended if I wanted to see a therapist or social worker. My husband asked her if this was part of what is referred to as palliative care. She said, YES!

So, what grew out of pain with cancer patients has grown into a wonderful sub-specialty which means that the whole person is being treated, not just pain. It's not so much a program like hospice that you sign up for but an offshoot of caring for the whole of you.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/types-palliative-care
https://www.cancernetwork.com/view/effective-palliative-care-what-involved
Palliative care is an interdisciplinary medical approach that is aimed at optimizing the quality of life.

If you feel that this is something that you lack then ask for it! Sometimes there's a whole separate department and sometimes it's just a referral to a particular doctor.

Does this make sense?

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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

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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

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@ashby1947

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

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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

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@ashby1947

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

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@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.

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@ashby1947

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

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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

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@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

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