Does anyone have experience with Palliative Care?

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.

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

Last spring I was in end stage liver disease. I was being processed to be on the transplant recipient list. But, knowing how slim it was for me to receive a liver, I was doing what I needed to do to prepare for my care and potential death. My liver doctor referred me to palliative care.

It was during Covid, so my consultations with them were virtual. But I was able to see a doctor for pain management meds and medical cannabis. I also spoke with social workers who provided great financial guidance. And, of course, a counselor who was wonderfully supportive.

You should be able to be referred by your provider to a palliative care practitioner. And, if there is not one in your area, there should be a regional opportunity. I live in southern Vermont and received my care from a medical center in New Hampshire.

The organization that John @johnbishop referenced is the national palliative care organization and they have numerous resources.

My best wishes for you.

@sueinmn My former mother-in-law, a very sweet lady, had a difficult time finding someone to allow her to "go along" with when she wanted to go shopping. She never learned to drive. It was an adventure for her. Carefully get dressed, walking shoes on, pocketbook stuffed with who-knows-what. And off to the store.

We went up and down each aisle, her marveling at "new confounded things", looking at everything, and of course interacting with fellow shoppers. Some looked pittance at me, others smiled and nodded, understanding completely. I learned to enjoy seeing her excitement, picking up weird items sure to confuse others at home. Then off to lunch at a restaurant of her choosing. It was a wondrous time that I cherished.

So much in this world is "a matter of perspective", isn't it?
Ginger

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?

Sue

Ginger, Yes, you are correct. Palliative Care has helped me too. They have so many resources to offer both of us. I think my spouse and I are drawing closer, but there are still difficult days, that's for sure. This week has been good though, with a drive to see a friend, another friend visiting and just a trip to the grocery store, slow motion with her on an electric cart. I bit my tongue several times to stop myself from saying "can't we go a little faster"?

Hi Deek15redpeppers. Have you tried checking the Internet for Palliative care organizations? If you find any on line, don’t forget to check reviews. Also, I can’t believe your Dr. and staff haven’t helped you out with info. My sister had Palliative care several years after her Lewey Body Dementia
was diagnosed. Towards the end, several years later, she had Hospice care. You don’t have to be terminal to have Hospice. They were the best. Good luck and let us know how your search goes.

bjanderson

That is so sad because many other issues besides cancer may benefit from palliative care. I hope the next comment will help you. Good luck.

@candysmommy, I wonder if this might help you find someone in your area - https://getpalliativecare.org/provider-directory/

Wish I could find that in my area,but without a cancer diagnosis I have not been able to find anyone to help me with it.