Anyone chosen palliative care? What are the last months/weeks like?

I need to change a few things I had shared. Please forgive me for my errors. I can only say it has to be my chemo brain, just not remembering things I used to.
My mom was 74 when she died. My husband reminded me that when she was taken to the ER after she developed a heartblock; she deceided to stop treatments, she had gone threw enough. My mom was actually in Hospice maybe a month or a little less. It just seemed longer. I do know in the start of her hospice there were days she would be agitated. I remember one of those times I came to help calm her. After she had calmed down, she said "I had a good life. I'm also glad I have you as my daughter." She wanted me to tell my other sisters this message too. Most of the time she was sleeping or at peace. I hope I didn't cause you any undo stress. My experience is true, just the time my mom was in hospice I had incorrect. Take care.

My Oncologist said that he will see that I have hospice care she the time comes, but palliative care is more of a mystery. I am early in the game so I'm self-administering, but I know I will need help down the line. What organization do I contact?

It is never too early to inquire about palliative care. It is symptom management care, not to be confused with end-of-life care. You can ask for or be referred for a palliative care consult at any time of the cancer journey from diagnosis on.

See this article from Mayo Clinic

Mayo Clinic Q and A: Palliative care — improving quality of life during a serious illness http://mayocl.in/2rd9Y6K

I am glad you are asking these questions because I did not understand this either, when I was trying to help my mother. I am glad Colleen Young is here to help clarify for you. In our case, the oncologist's office told us who to contact. They had a whole palliative team and there was one main nurse practitioner that would come out to the house. It really was helpful. With the palliative care, Mom could still receive all kinds of medical treatment including hospitalization if necessary. The nurse would stop by and it actually prevented Mom from having to go for office visits. For example, one time she had what seemed like a sort of minor skin rash. The nurse just happened to come by and tell us that those kinds of things can become more serious when a person is undergoing chemo. She prescribed medicine that would immediately help and we got it from a pharmacy the same day. She could just send prescriptions to a local pharmacy right on her phone. She also had other people on her team that she could send over -- like social workers, and I am not sure what else. During palliative care, my mom also had some personal help like people to help her shower and such. I think that was from the palliative team, but it may have been our local agency on aging. That is something else you could look into. The local agency on aging sent people to do handyman work and things like that, too.

I hope you can have a palliative nurse come to your home. I just thought it made Mom's life better by reducing the amount of times she had to drive in to doctors' offices and wait in waiting rooms and such. If not, I think they will still be a big help. I now remember that the palliative team had dietitians, too, that helped her with that sort of thing. She got a lot of helpful pointers, like Colleen Young told you, to just generally make her life a more pleasant and comfortable. If you have any questions about my experiences, don't hesitate to ask. I am sure I am forgetting some things.

God bless you

Thank you! This a wealth of information! I will contact my oncologist, the county and my health insurance company to see what is available.

Sorry for the late response. Yes, we have met with CommonSpirit several times. They provide both Palliative and Hospice services. In February 2019, Dignity Health merged with Catholic Health Initiatives, becoming CommonSpirit Health. Our contact is a very smart nurse who asks good questions.

to rfherald:
I'm 84 and made the choice to enjoy what I can of the rest of my life too. For me, it was a Whipple (yes, 1 and 1/2 years later I still have bowel problems but it may be my short stint of a very hard chemo) that took out the tumor on my pancreas (stage 2B?) and about 3 lymph nodes as I recall; NO MORE chemo in spite of its being highly recommended by my oncologist but very hard on me; and recently radiation (pinpoint type, can't remember the specific name) on a metastatic mass on my ureter, which is on the way to being successful (cancer antigen down from 100 to 50) and a piece of cake. I still feel great, just abdominal discomfort exacerbated by stress when I am going out or dealing with husband with early dementia problems. I am very happy with my decisions; so far nothing new on my pancreas. This is called palliative; not a cure! Good for you thinking for yourself and making a decision; very best wishes....

I want to thank y”all for this discussion. In early 203 I was diagnosed with stage 1a pancreatic cancer and had 8 rounds of folfirinox followed by the whipple procedure and another 4 rounds of folfirinox. At my last visit to Mayo (last week), there is no evidence of disease and my blood measures we all normal or close to it and trending in the right direction. Other than a hernia at the incision site and mild neuropathy in 3 toes on each foot, I have no after effects of the treatment. I have even been able to cease taking pancreatic enzymes (Zenpep), although I’m still monitoring my weight and stools.

So, I have nothing to offer in regards to palliative or hospice care. I just wanted to say ‘thanks for the discussion’. These are life and death questions involving quality of life and life satisfaction, family and ethics. We are all facing those questions at some level and at each treatment decision point.

Congratulations on your recovery. I wish you continued good health - so good to hear when someone beats this disease.
May I ask your mutations? I’m curious which ones besides BRCA 1/2 and PALB? are beating the odds.

My aunt is going through the pancreatic journey now. She is on chemo prior to hopefully the whipple surgery if she is strong enough. She had a backup in her stent, was admitted to the hospital, and developed a bacterial infection into her blood. She is still in the hospital but luckily with days of an antibiotic medicines, it’s appears to be under control. So was very sick from this but we’re hopeful she’s better and can continue her chemo soon. Without the stent replacement, then she would not have made it.