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

@sprky3 Thank you for writing. Your story is very real and I am sorry for your loss. It had to be difficult watching her go through this. It helps me visualize what my wife and I will have to face in the future. Thank you.

If I wrote infection injection, I apologize. My mother had an infected gallbladder caused by a back-up from a failed biliary stent. When they went to try and drain it, they accidentally released several types of infection into her system and they could not control it. That is what ended up killing her.

My condolences on your loss.

Since you want to know what the last weeks or months are like, I will share with you what I have seen in the people I have known that have died. Like Colleen Young said, it seems like each person is different but I sure would have appreciated honest information when my mother was dying.

I had a friend that voluntarily went in hospice at home. In her case, she just gradually ended up in a wheel chair and then was obviously very drugged up for the last few weeks until she died. Based upon what happened with my mother, I think the drugged up option is the way to go.

My mother got ascites and had a procedure at a hospital that released all kinds of infection into her system and that is what killed her. She was totally mentally sharp at all times until she died. She described that she was suffering a lot after the infections were released (I use the plural because cultures identified at least two types of bacteria and two types of fungi). I do not think that my mother was administered enough morphine to make her comfortable and we had no one there to help. She was conscious that she could no longer breathe and there was nothing we could do. If at all possible, I would try to avoid that set of circumstances. She was in hospice at home but the nurse left and we were on our own.

My grandfather elected to have hospice at home and he was given enough medicine that he appeared to be totally asleep and unconscious. I would think that would be more pleasant. He was not a cancer patient, so I don't know if that is different.

You asked about palliative care, though, and not hospice. My mother had been enrolled in palliative care up until the last 24 hours of her life. The palliative care nurse that came to the house was very helpful, much like a nurse in a doctor's office. In each case, whether it be the palliative nurse or the hospice nurse, they claim to do "everything." I am not sure what they consider everything, but we really would only see them for a few minutes and the rest was up to us. I did think the services provided through the palliative care system were helpful. They did provide other people that would stop in for a brief visit if you wished, like social workers for example.

My father died in a hospital. He was not feeling well and got admitted. I no longer remember why. He was able to visit and so forth and died during the night. I guess what I am getting at here is that the cancer patients I have known seem to all have been able to talk and visit and so forth right until the end of their lives. From what I have seen, which is very limited, I still do not know the best way to go. It seems to me, from what I have seen and also what I have listened to on Doctor Radio, that having enough medication at the very end of life is very important. If you start to have respiratory failure or are experiencing tremendous suffering, it seems to me that having enough medicine to be unconscious would be the best option. I would think you would need medical professionals to help you know when that is happening. In the three cancer patients I have been close to, I guess the part that surprised me was how much they could be engaged in life with such horrible cancer. My mom got palliative chemo and that gave us an additional eight months that were a real blessing. I have often wondered what I could have done to reduce the suffering in the last month of her life.

I have wondered if it is better to die in a hospital hospice unit so you have medical professionals there to be sure you are administered enough morphine (or whatever medicine you are administered). I have heard the doctors on doctor radio advise that some of the really bad things that have been described happened because the patient did not have enough medicine. I do not like home hospice because it seemed to put the burden on me/us of being the health care professional and I felt totally unequipped to do that. On the other hand, most people seem to want to die at home.

I am sorry to write such a rambling response. Some of this is still really painful for me to think about. I am sorry you are going through this. God bless you and I will pray for you.

My mom died with only one week of home hospice and it was wonderful. Our family had a second of panic when we learned it was too late to move her to a hospice facility, but in a couple hours we were overnighted the perfect liquid med combo. Hospice on the phone was encouraging and intuitive; such a calming presence.

Everything time-wise from the afternoon before to the morning at 1:11am 9/8 when Mom passed, we had an overwhelming calm and peace. It was an honor and privilege to be there with someone leaving this life who brought me into this life.

My mom died from gallbladder/bile duct cancer nine years ago. She was diagnosed in early March & passed away the end of June. My mom had surgery to remove the gallbladder (which had grown into the liver), several lymph nodes & part of her liver. She was in a lot of pain after that surgery. I think it was in April when she was strong enough to start chemo. I believe she only had two or three chemo treatments because the last chemo she had a reaction & ended up in the ER. She had developed a heart block, the top half & bottom half of the heart couldn't communicate. The electrical system of the heart got messed up. She was admitted to hospice in the hospital because they didn't think she would survive. Fortunately, my mom's heart more or less reset itself because she was strong & alert. She did need to go to a nursing home for some physical therapy. Her oncologist had ordered a PET scan and my dad & I were told the results. The cancer was everywhere & that was why she had a reaction when she had the chemo. Mom was then put under hospice care at the nursing home. The reason our family chose this is because my parents lived on a farm. The only way to get in the house was by using 5 - 6 steps for any of the entrances. If mom would have been home, she would have been alone most of the time. My dad had chores to do outside and my sisters that lived there also worked. I suppose if Mom would of been home we would have found a way to deal with this. I believe Mom was in Hospice care for about 2 1/2 months. I had a difficult time dealing with this in the beginning. I couldn't believe that my mom was in hospice, she was always such a strong person. I did come to terms with it and was there for my mom as often as I could. At the start of her hospice stay, she was talkative & pretty much just like herself. I remember they needed to put those leg compression things on her. When I saw her legs they were so thin. It came to a point where she wasn't eating much at all. We would try to keep her lips moist with the little blue sponges on a stick that we had soaked in water when we were there. She didn't talk as much as the weeks went on and she needed morhiphene more often. One time I came & Mom was sleeping. I thought I will just talk to her even if she was sleeping. As soon as I said something, my Mom's eyes flew open. She wasn't talking at this time but her eyes just bored into me. As the weeks continued on, I noticed my Mom reaching up or mumbling as she was reaching up. She was doing this more and more as time went on. The Hospice nurses said she was probably seeing someone from her past and they were there for her. My mom was just wasting away, not eating anything. We always told her it was okay, she could let go. I asked if the nursing home had a CD player we could use & they did. Mom liked hymns, so we had several CDs that we played softly in the background. We hope Mom found this soothing. Mom was getting Morphine a lot at the end because she was in a lot of pain. My husband & I had stayed with Mom on a Sunday afternoon. She was sleeping & would reach up ever so often. We went home and about an hour later my sister calls telling us Mom was asking for us. When we got there all of the family was in Mom's room. I couldn't believe Mom was sitting up, alert and talking to all of us. She hadn't done this in weeks! We all said what we wanted and listened to Mom. The next day she was laying quietly & she died later in the day. The thing I noticed was how Mom just wasted away. The cancer consumed her. I think it's important to get enough pain medication to keep you comfortable. I think some cancers are more painful than others. This was difficult sitting with Mom at times because I felt it was a death watch but I needed to be there for her. I hope I was able to help you somewhat. Just like the moderator said, it's different for each person. I think it makes a difference what your attitude is & if you have made peace. I too may need to deal with this in the future. I'm being treated for mucinous pancreatic cancer. It was caught early, but it's rare and only so many treatments are available. I look at my situation, it is what it is. I can't change it. I am living my life, doing things I have put off because I was working or didn't have time. So I'm making up for lost time. I hope you are able to enjoy the remainder of your life. Make sure to see your family & friends. I'm sure whatever you choose it will be the right thing for you, since it will be your choice. Take care.