Does anyone have experience with Palliative Care?
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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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?
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@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
@Erinmfs- Nothing to worry about.
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?
@Erinmfs- Good morning. It's nice to talk with you. Hospice is not the same thing as palliative care, although their aim is the same, the populations are different.
Palliative care is an off-shot of Hospice but it is not for people who are dying. It is simply a program to improve the quality of life, in all aspects, of a person during a serious illness.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-palliative-care-improving-quality-of-life-during-a-serious-illness/Does this make sense?
I have experience with it, my father was in a hospice. I highly recommend a hospice for loved ones when God has prepared a place for them, and the time is right. The hospice we utilized was beautiful, and helped me through it. I couldn't have had my father at home, he was an alcoholic, and a mess. He was always shouting, especially at me. He had assisted living, and then straight into hospice, no SNF care.
@jakedduck1- Hi. We haven't spoken in a while. I hope that you are well. Essentially you were doing the same thing at home, coordinating things, keeping your folks comfortable and out of pain, scheduling appointments, and getting meds. It's a big job. I did it for my mom too. In the hospital it's a patient's team who does it all, keeping in mind what the patient wants. You do understand Palliative care, you did it, but at home. I'm sure that you followed all the doctor's recommendations and medicines to keep your folks comfortable. I'm also sure that you did it with tender and loving care.
I agree with Becky, it's not the actual hands-on care, but the hospital/ doctor program that is set upbaround what a person needs. Does this make sense?
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
@becsbuddy
First of all thank you very much for the kind words.
I guess I was providing palliative care and I didn’t realize it.