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

Interested in more discussions like this? Go to the Chronic Pain Support Group.


Ah, the urge to "get it done". I had an "aha" moment once with my Mom in the grocery store – to her it was an outing, to me it was an errand.

It was a matter of perspective. I decided to make it an outing for myself too. I watched people. I looked at products on the tops shelves in each aisle – you know, the odd stuff like specialty condiments, artichoke hearts and imported cookies.

Interestingly, I came out of the store relaxed, not impatient like I usually was at the end of one of our grocery trips. By that time in her life, enticing her to eat was not easy. So the next time we went to a local specialty grocery and made it an adventure. Sure, the staple items cost a bit more, but we found a few things she would eat, and we enjoyed the journey.

Caregiving changed my perception of many aspects of life. Did you know a McDonalds' Filet'o'Fish sandwich could be a treat if you weren't able to drive up and get one whenever you wanted it?


Jump to this post

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!



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.

Please sign in or register to post a reply.