Does anyone have experience with Palliative Care?

Hi @ashby1947 I'm Scott (aka Indianaswp) who Colleen referenced in her response to your initial post.

I realize each patient, their illness, and journey is unique. No two are the same so I can only relate our experiences.

In her late 40s my wife was diagnosed with a brain tumor. Due to the type and location of her tumor coupled with post-surgical complications, she was in palliative care for the first 12 years of her war, then in home hospice for the last 2+. There was no chance of curing her, so her care was always focused on keeping her comfortable, pain free, etc.

This was mostly successful as a course of care for her. She was by and far most often pain-free and comfortable. That said it wasn't perfect and, again in her case, her medicinal cocktail required constant adjustments. It wasn't until she was in home hospice that they were ever able conquer her incredibly high anxiety. We certainly realized no course of care is ever perfect and always knew palliative care was her only choice given her situation. We never regretted the care she received.

I'm happy to answer any questions you might have!

Strength, courage and peace

Hello @ashby1947 My husband has supportive/palliative care. He didn't always and our experience with supportive care is absolutely wonderful! My husband has Stage IV Lung cancer and has other issues as well (Tachycardia, dizziness issues, tremor, pain issues, etc). I have had cancer and recently lymphedema from my cancer surgery and hospitalization with sepsis. I am my husbands sole caregiver as well as taking care of my Mom and Mother In Law, who don't live with us but have multiple needs and medical issues as well that my husband and I take care of for them. At one point my husband's cancer was called, 'cancer of unknown primary'....the doctors didn't know the actual type of cancer (we now have a diagnosis guess at least). My husband takes about 12 different drugs, is having chemo and immunotherapy and radiation treatments. I'm still working. Because there were so many doctors and concerns it was overwhelming for me to manage all the drugs, know which doctors to call for what, etc. We were running from appointment to appointment and I was trying to manage it all and make decisions about what might be causing his symptoms. Although I think I do a pretty great job (ha ha) one doctor prescribed an increase in dose of one of my husbands meds which caused him to become highly erratic and I 'lost' it with our oncologist (who is a great doctor). I was expected to manage a complicated situation and although I spent a lot of time on the phone with docs and reading and researching - the oncologist got us supportive care and it's been a real blessing. Now I have one doctor to call about concerns and he makes the decision as to what we should do. He coordinates care with all the other disciplines and recently got my husband physical therapy for his dizziness....something I would have NO IDEA even existed. All blood work is done in our home, a nurse visits once a week and is available by phone 24/7, we have social service support and a chaplain that visit and try to help me as a caregiver to manage the workload with this. My husband has Medicare and a supplement with our insurance carrier and the costs are finally manageable for his care as well. I think when I 'snapped' it made them realize how complicated my husbands care had become and how we couldn't manage it without more support. The referral was made by our oncology team in this case. The care has to be reauthorized every six months in our case. We're on our second six months. My husband's cancer 'qualifies' him as terminal and not curable but we're still hopeful that he will have much more time than we thought 6 months ago....more like a years perhaps. If your situation is becoming too overwhelming I would certainly request supportive care because I believe it's extended my husband's life and kept me from losing my mind and health. Good luck and Hugs.............

Hi Colleen - Thank you for your response and information. Yes, I spoke with a person at Mayo Jacksonville about their palliative care program. I learned that i need a referral from my doc in order to get an initial consultation. I see my PCP next week, so I don't think there will be a problem. I also learned that Medicare and my supplemental are accepted for payment. You are so good at following posts and making connections. You are a bonus in the Connect community, and I am grateful for the work you do for all of us! Thanks again. Sue

Great question, @ashby1947.
Palliative care is more appropriately named Symptom Management care or Comfort Care. It is not exclusively meant only at the end of life, but is multidisciplinary care focused on managing pain and other symptoms that affect quality of life. It is a holistic approach dealing with physical symptoms and emotional and spiritual needs as well, and can involve family members, not just the patient.

As you mentioned, palliative care may be offered for people living with cancer, heart conditions, kidney conditions, multiple chronic conditions and more. For this reason, I have added this discussion to multiple groups on Connect to gather experiences from different members such as @IndianaScott @bluffitis @wsh66 @marvinjsturing @mscarano @becsbuddy @nicee and others.

Ashby, have you inquired about palliative care at Mayo Clinic in Jacksonville?