How the end came...In response to an earlier message

My Mom passed away in October of pancreatic cancer. We had tried so hard the whole time to have hope. The week before she passed my Mom woke up and thought she was better. I think she forgot she had cancer and thought she was recovering from some an illness. She wanted us to call the family and tell them the good news. She kept saying how glad she was that she had gotten up that day. That night the hospice worker showed up and asked her how she felt. She told him she felt so much better and he said " Most people feel better the day before they die". My mother was devastated. I think she had literally forgotten that she was dying. When the hospice worker left the room he was also very distressed. He said that he had probably just made the biggest mistake of his career. We were so upset with him, but what could we do. He was a kind man and had a very hard job. He just made a mistake. What was done was done. What a gift though, to have one good day where that spector of death was not hanging over her. That was the last day that she spoke. She died a week later. 

I wish now in retrospect that we had been better advocates of what we as caregivers needed from hospice and from our doctors, and of what we wanted from them. Even though my mother did eventually pass away I never did believe that we should give up hope. I know that hospice felt like she had to come to terms with her death. I think that is why the hospice nurse reacted in the way that he did. I think that my mother did that in her own way but she wasn't a very outspoken person, especially with strangers. I wish that we had sat down with hospice and with our doctors before she died and just had a conversation about these issues. My grandmother also passed away last year from Ovarian cancer. The hospice in her area was amazing. They were at our doorstep every day. In this case we had asked them not to use the word hospice in her presence. My Grandmother was a fighter and there was no way she was going to admit defeat. Most of the nurses were very good about our request. I guess that is one thing to be aware of. Be vocal about your needs, wants, and beliefs. One nurse did come into my Grandmother's room and insisted on talking to her about dying. My Grandmother was a feisty woman and she really let her have it. I wish that that nurse had respected our wishes because in the end my Grandmother knew she was very ill. But she wanted to mantain that never give up attitude and I believe that it helped her deal with the circumstances. I wish that we had been more vocal with the hospice care nurse for my Mom. That will always bother me.   

When my mother died we had no idea what to expect. We didn't know whether she was in terrible pain. I now know, after talking with people that hospice should have talked with us about what was going to happen so that we were more prepared. With my Grandmother it felt like they were there supporting us every step. It wasn't that way with my Mom. My mother wasted away. She went from 180lbs to 85 lbs. It was very hard to watch. Apparently there are things that happen before a person dies which happen similarly in most people. Especially in people who are not eating. I would advise you to ask whoever is treating your dad what to expect so that you will have that peace of mind (if there is such a thing) when it does happen. And if they are not helping you enough, then I would advise being a bit of a pain until you get the help you need. That is one thing that has haunted my father and my family. We don't know if we did everything we could to make Mom comfortable at the end. I wish that we had been a squeeky wheel because in the end we just felt so helpless.

We took care of both my Mom and Grandmother in their own homes because that is where they wanted to be. It's a hard choice. We do wonder whether it would have been better to have gone to the hospital, but both my Mom and my Grandmother had such an intense desire to be at home. I wish we had had better support care for my Mom. We really did consider going into a hospital care setting because we were unble to get  enough support from hospice. Unfortunately in her area there were too many people needing hospice and not enough to go around. I think in her case though even the best of the best wouldn't have made up for being away from home.

I know that this is truly the most heartbreaking time. I pray that your Dad will get a miracle. I know the pain that you are going through. It is a cold and horrible disease. My Mom was only 57. Too young to be gone. My Grandmother was 86 - if it weren't for the cancer she probably would have lived well into her 90's. That's the irony of it all. Both my Mom and my Grandmother were very healthy people who just happened to have cancer. It's devastating.

Jessie

 

how do you know when the time has come.  They moved my grandmother to Hospice.  They have taken her off all her meds except for pain medicine.  Her urine is dark and has become jaundice.  Her breathing is slowing down.  Can you please advice me, I just do not want her to suffer much longer.

 

Is your Grandmother still eating or drinking anything? I think the breathing may be the most telling thing. At least in our experience. Unfortunatley my Mom lived for several weeks after she stopped eating. My Grandmother choose to be on an IV for hydration and nutrition and she went a lot longer then we ever thought she would. Almost 3 months. 

Do you have any support there. I think that they may be able to share with you what specific signs to look for. We never wanted to go there. It seemed contrary to hope. It seemed like giving up. But when the end did come we were so unprepared.

I discuss my Mom's passing in a little more detail down below. I figured I ought to put a little warning here because I don't want anyone to read it unless it is really something they want to read.

I am so sorry for your suffering, and for your Grandmother's. It was unthinkable for us at the start of my Mom's cancer to imagine wanting her to pass away. Of course I wish beyond all else that she had had a miracle. Even that last week, when she thought that she was better, I was just hoping it really was our miracle. She got very gravely ill the 2nd week of September and passed away on the 23rd of October. It became very obvious to us that the suffering was far too much and eventually we just wanted her to be free. She went downhill very rapidly. Her breathing was always steady though - until the very end. The last day that she was with us my Aunt noticed that her breathing had become very shallow. She went downstairs to tell my Dad. They then sat with her for the next hour or two. It was very distressing for my family because she did not go easily. She seemed to be gone several times and then started breathing again. Her eyes were open the whole time. It was very distressing. My Mom did not like all of the drugs and she did not want to be out of it (although by the end we are not sure how much she was aware of.) My Grandmother was pretty heavily drugged in the end and just fell alsleep. Although we did see a change in her breathing as well. As I said, the hospice care was an issue. I think they may have been able to make my Mom's passing more peaceful. But then again, she did not want us to drug her so it was a Catch 22.

This is very hard to write. I know you wanted a true answer. I think judging by the differences in my Grandmother and Mother's passing everyone goes in a different way. But I do think that there are signs that are more definate then others. I hope you have good support.

Love,

Jessie

My mother also became very jaundiced towards the end. Her eyes were the most noticable.

 

Jessie

Jessie, your message reminds me so much of our situation. My father just died on Saturday (2/10) night from this horrible disease. He had not eaten since Christmas and had been in the hospital for weeks. He was terribly jaundiced and had become skeletal. He was on morphine every 4 hours until right before he died when the hospice department finally got approval for every hour. My dear father had lapsed into a coma like state on the Wednesday night before his death. Thank god i saw him that evening, it was his last where he was able to speak and consistantly focus his eyes. Like your mother, the breathing (and the coma state) were the telling signs of his passing. Saturday night hospice called us back to the hospital and said the end was near. We sat with him until his last breath and it was the most horrible thing I've ever seen. He was 56 and didn't want to go...he fought up until the very end. He also wanted to be home and we wanted that for him so badly, but he had an obstructed bowel (which brought him to the hospital) and we didn't think we could care for him properly at home. We never saw his death coming so fast. He was diagnosed in March of 2006, but the end happened so quick. We thought they could fix the obstruction and he could go home. Sorry to ramble here. I just know my mother and I are doing the "should have, could haves" and your line about whether hospital care being better is a mute point. Either way it sucks and cancer is horrible and we both lost parents way too young. I'm sorry for your pain and I hope my experience can help others understand what happens at the end. God bless everyone here and particularly the doctors and researches who strive to find better solutions for the horror that is cancer. --Darlene

unfortunately, i am here in Texas and my grandmother and the rest of the family live in miami.  I just came back from a funeral last week, which was extremely emotional. My husbands godchild/niece died suddenly from an anurism.  My Mom called me the day of her viewing to tell me they had to put my grandmother in the hospital.  A week ago tomorrow my mom told me that grandma had cancer and that it has spread to her other organs.  My dad told me that it is not worth me flying home right now, since she would not know that I was there.  She is in hospice now and they have called my parents this morning to tell them that they should come and say there goodbyes her feet and fingers have turned blue and her breathing is real slow.  She has also become very jaundice and is not coherant.  It is very sad and the waiting and knowing that she is suffering hurts even more.  Thank you for responding.

All I can say over and over and over is I am so sorry. It is so awful. It is just ridiculous how quickly this disease can take over. My mother moved my sister into her dorm for her first year at college. She was even taking baskets of things up the stairs to her dorm room. This was the first week of September. Two weeks later she was bedridden. We had heard that once the downhill starts it goes very fast. I had been watching a blog site from a pastor on the East Coast who wrote about his pancreatic cancer. He preached Christmas day and two weeks later he was gone. It is the most heartbreaking ordeal. Whoever would have thought that pancreatic cancer would be more deadly then brain cancer? I barely even know what the pancreas does..... I know the path that you are all starting on is a very hard one. It feels like there should always be an answer to lifes problems. If you work hard enough to find an answer there should be one. But this problem was so big, so ananswerable. It is heartbreaking.

 Jessie

About two years ago my husband lost both a grandfather and grandmother (from opposite sides of the family) from Pancreatic Cancer. 

My father began experiencing abdominal pain and loss of appetite shortly after a knee replacement this past December.  We thought it was possibly due to the pain medication he was on.  By Christmas the pain in his abdomin and back were so bad he could not lie down to sleep and had to sleep sitting up.  The doctors began running tests and it seemed each holiday and weekend delayed any relief from the pain or a diagnosis.  Between Christmas and New Year and ultrasound revealed something that resulted in an immediate MRI.  Both he and my mother were terrified, and the doctors told him to go home and enjoy the New Years and that the results would be discussed the following week.  It was a long weekend both emotionally and physically.  The next week the GI doctor told my parents that dad had a large mass in his Pancreas and spots on his liver and that they would be sending him for a biopsy before meeting with the oncologist.  The pain continued, the biopsy was performed and we met with the oncologist on January 8, 2007.  By the time the appointment arrived my father was doubled over in pain, the doctor informed him that the biopsy confirmed cancer in his Pancreas, Liver and Lymph nodes and we requested that dad be admitted to the hospital immediatly for treatment of his pain and chemo at his request.  Dad did not want to give up.  The doctors spent the next two weeks trying to control his pain, he had one round of chemo, never really ate while he was in the hospital and he was still never able to lie down to sleep. His feet and abdomin began to swell.  While in the hospital, the doctors performed a celiac nerve block and inserted an internal pump for his pain and then sent him home.  We choose to start with Palliative Care in the event he made a turn for the better at home more chemo was still a possible option.  At home the Palliative Care providers were able to increase dad's medicine enough so that he could finally lie down to sleep, we were so thankful to finally see him rest.  After one week on Palliative Care, dad was still not eating and getting weaker.  We agreed with the doctor that at this point chemo was not a good choice and we switched dad over to hospice care.  The hospice workers were wonderful and they did everything they could to provide support and make dad comfortable.  The aid helped make dad look so nice and clean that final week. It was hard for him to communicate with us, I"m not sure if it was the amount of medication he was on or a progression of his illness, but we made sure that we kept telling him everything that we had to say.  Dad developed "the cough" and we knew it wouldn't be long at all.  Over the next couple days, the family gathered by his side as his breathing grew shallow.  The nurse said his heart was strong and his pulse and blood pressure were still high but that fluid was gathering in his chest and that his heart would eventually we unable to beat at that rate.  We gathered by his beside and prayed for him to find peace.  The final night his breathing was loud, congested and very regular (40 breaths per minute throughout the night and into morning).  It was one of the most difficult things I ever watched.  The next morning and 11:11 on February 11th dad took his last breath only about 1 month after his diagnosis.  I pray for anyone who has to experience this terrible disease and I am also committed to helping raise awareness of Pancreatic Cancer. 

My mom to died so suddenly.  She was doing great on Christmas, she even made dinner.  The next day she laid down on the couch and could not get up.  She was brought to the hospital on January 8th and died on January 13th.  In just two short weeks her cancer went from being in control to spreading absolutely everywhere.  She was supposed to come home with hospice but she had blood clots in her abdomen that moved to her lungs and killed her in a day.  I too watch her go from a coherent state, to a comatose state, to death.  It was not peaceful or beautiful to me.  It haunts me each and every night.  I could never imagine not being there with her, but I don't know if I will ever recover from watching my mother die. 

I hope that in time we will all have peace and they will find better treatments for this terrible type of cancer.

When my wife passed, it was very peaceful. She has stopped urinating for about 5 days, she has long been jaundiced and swollen. She didn't have the day of normalness that Hospice told us she might have. She did get out of bed the day before for just a minute (with our help). In the wee hours of the morning, she woke me up. She couldn't form words, but I could decipher her mumbling. Later that morning before she passed, I noticed that her breathing was becoming very erratic and her pulse was slowing over a period of a couple of hours. I was lucky enough to be with her when she took her last breaths. She was on a morphine drip and it was peaceful. Hospice was very good at telling us what to expect and for the most part, they were right. Everyone/experience is different, but I knew enough to know when our fight was almost over.