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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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
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.