Does anyone have experience with Palliative Care?

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?

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

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 @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

The home hospice program that provides care for my 78-year old wife, who suffers from Alzheimer's disease, recommended right from the outset six years ago that their caregivers provide palliative/supportive care. That seemed sensible to me. So that has been the paradigm for her care ever since. While she was at home, my wife received essentially the same type of services your husband receives -- care coordination, five day a week home care from visiting aides, a chaplain's visit once a month, a doctor's visit also once a month. She is now in a nursing home, receiving minimal medication except for her glaucoma. She is now wheelchair bound and no longer talks. But she is aware of my presence when I visit (all too infrequently because of covid visitation restrictions) and seems to perk up when she sees me. I am hoping to be able to bring her home with me before too long and to go back to the supportive/palliative care we provided before she went into a nursing home. The reason she went there had nothing to do with her. I was hit by a car, suffered broken bones and was hospitalized. Because I was not able to care for her properly as I was recuperating, she entered the nursing home a year ago at the recommendation of a social worker who worked with us. I am now almost completely recovered. And I miss her and do want to spend the waning days of our long marriage separated from each other. I'm hoping to be able to pull it off. Wish us luck! John

@ashby1947 So sorry to hear of your health problems. I currently am receiving caregiving from Home Instead Senior Care and am quite pleased with their services (i had a hip replacement and my husband has Alzheimer's). Home Instead provides all levels of care, including housekeeping, food preparation, transportation, etc. How exactly Home Instead might assist you would be determined by meeting with them. I currently have 24/7 care, but will be reducing my hours. Hope this helps.

My husband, who had a terminal mesothelioma diagnosis from Mayo Rochester, saw their palliative care (PC) department many times, but I recall that I had to request those services during our initial consults with pulmonology. I did not find any of their offerings to be particularly helpful in our case and some of what they did was hurtful. We did not live in the Rochester area, so I suspect that the best way to get the optimum care is to live where your care team is located. I am disappointed that our pulmonary doctors did not initially set us up with PC - mesothelioma is a difficult cancer from a symptom management perspective. So my experiences with a PC term were not what I'd hope it is for others. Perhaps my expectations are too high. At the end of his life, we got on board with our local hospice. That was also an unfortunate experience. I wish doctors would focus more on encouraging quality of life instead of trying to "treat" diseases from which there is no recovery.

@lisakuehl I am saddened to hear the responses from both Palliative Care and hospice groups did not live up to what you needed from them.

I am wondering if it would be helpful for you to explain your situation to them, and let them know how they could have improved their actions? It may be very rewarding for you, help with your grieving process, and pave the way to another patient's family having a better experience.
Ginger

@ashby1947 Good afternoon.it sounds as though you are trying to work through an emotional and physically exhausting situation. How long have you been doing this? I know you said that your husband gets very emotional with this. Is he able to help you?
I don’t personally have experience with palliative care, but I was on the palliative care team at the hospital where I worked. Our team would set up meeting with the patient and family to help them decide what they wanted and then make recommendations and referrals. Think of these meetings as interviews. Do you like their philosophy, can they provide care you need, and do they have procedures around protection from Covid-19?
I think the suggestions of Home Instead and other healthcare agencies would be good to look at. Some hospice groups also have a homecare agency, so check with them. Jacksonville Mayo would be a good starting point for information on Palliative care and also may have some referrals for you.
You will also want to think about how much help you will want and can tolerate. Maybe just someone to come in the mornings to help you dress, make the bed, and clean the kitchen is enough.
This is a lot to think about. But remember, you can always get more or less help as time goes along. I wish you luck in your search! Hopefully, you’ll come back and tell other members what you’ve learned ! Will you do that?

I will think of you often and send good thoughts your way! I cared for my mother who had altzheimer's for many years. You're blessed she still knows you and you can enjoy each other. Hopefully, she'll get back home to you soon. Blessings.