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need answers for dying mom
My mom has small cell lung cancer. She had much stomach pain and I thought it was the lung cancer spreading. A visiting nurse came to the home and said it was something else. We rushed her to the hospital. They said she had pancreatitus. They ran some tests and her enzyme levels were high. They then said she had pancreatic cancer. They based it on the fact that: A. She was not a diabetic, B. She did not drink alcohol, C. She had her gallbladder out 2 years ago, therefore it must be D. Pancreatic Cancer. They did not find any tumors with a CAT scan.
My mom
My mom
Jeanette, I haven't visited the board in quite some time and I am sorry to be resonding so late. My mom died last June from PC. It is a horrible disease. If only the doctors could give the patients a tiny bit of hope, but apparently they can't. I hope your friend is still with us. If she is like my Mom, she is probably so weak and not feeling like eating. Do whatever you can to get her to eat. My mom's visiting nurse suggested high protein foods like eggs, drink ensure although she preferred instant breadfast (the taste is better but not as fortified). Her visiting nurse was wonderful. She came once a week and besides checking on all her medications (I think she was taking about 20 pills a day) she discussed things with my Mom that none of us were comfortable with. She had my mom fill out all the necessary papers so that she wouldn't be kept alive on machines. She had social workers come and talk to her and at the end she tried to arrange for hospice care which didn't really work out. I helped my mom with things like organizing her bills, washing her hair and cutting it, I would take her for a walk on the days she got dressed to go for chemo. There is so much she will need help with. Let me know if you have any specific questions that you think I might be able to help with. I am so sorry and I wish you the best.
I'm very sorry to hear of your friend and the pain you are going through too.
From a medical standpoint, I don't know much about P.C., because I don't know if my mom really ever had it.
From a personal standpoint, I would ask her what she would like you to do for her. Stay with her and keep her company.
I will keep you in my prayers.
Diane
From a medical standpoint, I don't know much about P.C., because I don't know if my mom really ever had it.
From a personal standpoint, I would ask her what she would like you to do for her. Stay with her and keep her company.
I will keep you in my prayers.
Diane
I HAVE A VERY GOOD FRIEND WITH PC. SHE WAS JUST TOLD TODAY IT IS THE BEGINNING OF THE END. SHE IS SOOO TIRED. TIRED OF TRYING, TIRED OF THE NEEDLES, TIRED OF BEING TIRED. SHE HAS A 14 YEAR OLD SON, AND I CRY JUST THINKING OF WHAT SHE IS GOING THROUGH. IS THERE ANYTHING I CAN DO TO HELP. I HAVE TRIED TO DO SOME RESEARCH TO FIND OUT WHAT TO EXPECT IN THE FUTURE, BUT SO FAR HAVE BEEN UNABLE TO FIND MUCH. A LOT OF SITES TALK ABOUT DRUGS, AND WHAT HAPPENS WHEN YOU TAKE THEM. I AM SO AFRAID FOR HER AND THE PAIN SHE IS IN. I JUST NEEDED TO FIND A WAY TO EXPRESS MY ANGER AT THIS, SHE IS ONLY 41 YEEARS OLD.
I HAVE A VERY GOOD FRIEND WITH PC. SHE WAS JUST TOLD TODAY IT IS THE BEGINNING OF THE END. SHE IS SOOO TIRED. TIRED OF TRYING, TIRED OF THE NEEDLES, TIRED OF BEING TIRED. SHE HAS A 14 YEAR OLD SON, AND I CRY JUST THINKING OF WHAT SHE IS GOING THROUGH. IS THERE ANYTHING I CAN DO TO HELP. I HAVE TRIED TO DO SOME RESEARCH TO FIND OUT WHAT TO EXPECT IN THE FUTURE, BUT SO FAR HAVE BEEN UNABLE TO FIND MUCH. A LOT OF SITES TALK ABOUT DRUGS, AND WHAT HAPPENS WHEN YOU TAKE THEM. I AM SO AFRAID FOR HER AND THE PAIN SHE IS IN. I JUST NEEDED TO FIND A WAY TO EXPRESS MY ANGER AT THIS, SHE IS ONLY 41 YEEARS OLD.
Dear Diane. I emphasize with your pain and especially frustration. We all put our trust into our doctors but they all to often make mistakes. Your mom's doctor said she did not make things seem critical. If she had he would have probably said she exaggerated her problems and suggest an antidepressant. It is definitely not your fault. You gave her a great gift of your love and support. That was the most precious thing you could do for her. Your mom was so lucky to be so loved and you were so lucky to have her in your life. The best advice I can give you is not to dwell too much on "what if's" or "should have's" because you can become consumed. Treasure the good moments and learn from the bad. Best wishes to you.
Best of luck. I hope you will get all of the right answers. Please let me know. I'm still saying prayers.
Diane
Diane
Dear Diane,
My husband came home from the hospital today. Pancreatitus is subsiding but he needs to have the tubes place into his bile duct to drain the bile out. I took your advise and looked into the Cleveland Clinic and you are absolutlely right. I will call and make an appointment tomarrow..they said they can take us within two weeks. My husbands Doctor agreed that they were the best but HAD A FIT that we are going there. My husband has only one chance to have someone clean out his bile duct or place the tubes, since they are permanent. We certainly are going to go to the BEST facility. You do not know how much I appreciate the information. Thank you,,,,I will post when we come back to let you know how things turned out. THANK YOU DIANE...Victoria
My husband came home from the hospital today. Pancreatitus is subsiding but he needs to have the tubes place into his bile duct to drain the bile out. I took your advise and looked into the Cleveland Clinic and you are absolutlely right. I will call and make an appointment tomarrow..they said they can take us within two weeks. My husbands Doctor agreed that they were the best but HAD A FIT that we are going there. My husband has only one chance to have someone clean out his bile duct or place the tubes, since they are permanent. We certainly are going to go to the BEST facility. You do not know how much I appreciate the information. Thank you,,,,I will post when we come back to let you know how things turned out. THANK YOU DIANE...Victoria
Hello again...
I have heard a lot about living donor liver transplants and there are doctors out there who will perform them, albeit probably few. It may take some research, these doctors could be in another country where medical breakthroughs are more advanced than the U.S. (Europe?) His brother must have a heart of gold, how wonderful. If I come across any info or good websites I will pass them on to you. Take care and God bless.
I have heard a lot about living donor liver transplants and there are doctors out there who will perform them, albeit probably few. It may take some research, these doctors could be in another country where medical breakthroughs are more advanced than the U.S. (Europe?) His brother must have a heart of gold, how wonderful. If I come across any info or good websites I will pass them on to you. Take care and God bless.
Dear Diane
What a nice person you are for answering my posting especially since you are going through such a difficult time. I thank you. Since both you and Cassandra spoke of second opinions I would like to tell you that since my husband was diagnosed in 12/98 with bile duct cancer, I immediately took him to the University of Pennsylvania. I've been a cancer patient there since 1992 (melanoma) and my oncologist is the best. My doctor referred us to a surgeon (who I knew already, he did one of my surgeries) and that surgeon said there was nothing he could do. People do not recover from cholangiocarcinoma. He did, however, call a transplant doctor at the University of Michigan and we went there. After a half an hour consultation he told us my husband was not a candidate for transplant since he had cancer. We came home and I called the National Cancer Institute in Bethesda to see if any trials were in progress for cholangiocarcinoma and there WAS. So we did all the paperwork and my husband was accepted into the trial..AH ha, we had some hope. We went to N.Y. and they did every test there is to get positive cytology. Three guesses. They could not get any scan/test or other numerous testing they did on him to come back positive for tumor/cancer. I mentioned in my first posting that there were no positive pathology reports. Now our problem is that they put in 3 stents into his bile duct and they are closing up. The steel stents that they put in cannot ever come out and they are put into terminal patients. Had they put in plastic ones we wouldn't have this problem. I do not believe he has cancer. I think he was misdiagnosed. He is still in the hospital and will be released tomarrow. The pancreatitus is almost gone but he is bright yellow because one of the stents is closed. The next step is for them to put tubes into his liver with external drainage bags. This is PERMANENT. I think they are going to schedule this for next week. My husband does not know this yet. He is only 52 years old. He is not sick. He has not lost weight. He golfs 4 times a week and 2 weeks ago won a huge tournament of 80 men. He turned jaundiced 2 months ago because of the closed stent. I swear you would never suspect he was ill except for the jaundice. His brother has offered part of his liver for transplant but no doctor will perform it. When they tell him that he has to have the permanent tubes and drainage bags tomarrow I know he will go into total depression. He has been through so much and has had such a positive attitude but this is what is going to be the breaking point. I suppose I am through venting. There doesn't seem to be an answer for our problem. If anyone has an idea I sure would like to hear it. Thanks Diane and Cassandra. Victoria
What a nice person you are for answering my posting especially since you are going through such a difficult time. I thank you. Since both you and Cassandra spoke of second opinions I would like to tell you that since my husband was diagnosed in 12/98 with bile duct cancer, I immediately took him to the University of Pennsylvania. I've been a cancer patient there since 1992 (melanoma) and my oncologist is the best. My doctor referred us to a surgeon (who I knew already, he did one of my surgeries) and that surgeon said there was nothing he could do. People do not recover from cholangiocarcinoma. He did, however, call a transplant doctor at the University of Michigan and we went there. After a half an hour consultation he told us my husband was not a candidate for transplant since he had cancer. We came home and I called the National Cancer Institute in Bethesda to see if any trials were in progress for cholangiocarcinoma and there WAS. So we did all the paperwork and my husband was accepted into the trial..AH ha, we had some hope. We went to N.Y. and they did every test there is to get positive cytology. Three guesses. They could not get any scan/test or other numerous testing they did on him to come back positive for tumor/cancer. I mentioned in my first posting that there were no positive pathology reports. Now our problem is that they put in 3 stents into his bile duct and they are closing up. The steel stents that they put in cannot ever come out and they are put into terminal patients. Had they put in plastic ones we wouldn't have this problem. I do not believe he has cancer. I think he was misdiagnosed. He is still in the hospital and will be released tomarrow. The pancreatitus is almost gone but he is bright yellow because one of the stents is closed. The next step is for them to put tubes into his liver with external drainage bags. This is PERMANENT. I think they are going to schedule this for next week. My husband does not know this yet. He is only 52 years old. He is not sick. He has not lost weight. He golfs 4 times a week and 2 weeks ago won a huge tournament of 80 men. He turned jaundiced 2 months ago because of the closed stent. I swear you would never suspect he was ill except for the jaundice. His brother has offered part of his liver for transplant but no doctor will perform it. When they tell him that he has to have the permanent tubes and drainage bags tomarrow I know he will go into total depression. He has been through so much and has had such a positive attitude but this is what is going to be the breaking point. I suppose I am through venting. There doesn't seem to be an answer for our problem. If anyone has an idea I sure would like to hear it. Thanks Diane and Cassandra. Victoria
Hi,
I'm sorry to hear that your husband is so ill, sounds like he's been through a lot! I will try to answer some of your questions and hopefully ease your mind a bit.
With pancreatitis it's true that you cannot eat when you have it, but the french fries he ate wouldn't have made a difference either way. The reason "not eating" wasn't on the instruction sheet is because he wasn't expected to get pancreatitis. He got pancreatitis from the ERCP that was performed, probably because they accidentally injected the dye into the pancreas. This is pretty common after an ERCP, and VERY painful. With pancreatitis it usually subsides in 3 days, during which they will have him on I.V. fluids, pain meds, and maybe some ice chips but no food. If it persists for 7 days or more (pretty uncommon), they will consider TPN for a few days until he recovers. TPN (total parenteral nutrition) is an "I.V. food", where everything he needs nutritionally in a day will be infused through a catheter implanted into a large artery in the chest. PPN (Periferal parenteral nutrition) is basically the same thing, except that it can be infused through the I.V. catheter he already has, and the PPN solution has a lower concentration of dextrose than TPN. PPN can be irritating to a small vein and sometimes painful, so it is used on a very short-term basis. TPN can be used as long as necessary, and people can even live on this exclusively for many years.
The doctors are doing things right as far as his pancreatitis goes, and everything they told you about it is true. He will most likely recover before they even have to think about TPN. Unfortunately, Diane's mother was already very ill and there were other circumstances involved in her situation. Almost no one dies from pancreatitis alone, but it sure is a horrible couple days to go through. The "cancer" sounds kinda fishy. It's a bit strange that the doctor can confirm cancer with negative biopsies, just from "seeing it before". I would definitely not accept that and seek out a second opinion as soon as possible.
I hope he's feeling better by the time you read this! I'm sure he will be back home before you know it- asking for french fries. ;0) I will check back here if you have any more questions! Good luck and God bless.
I'm sorry to hear that your husband is so ill, sounds like he's been through a lot! I will try to answer some of your questions and hopefully ease your mind a bit.
With pancreatitis it's true that you cannot eat when you have it, but the french fries he ate wouldn't have made a difference either way. The reason "not eating" wasn't on the instruction sheet is because he wasn't expected to get pancreatitis. He got pancreatitis from the ERCP that was performed, probably because they accidentally injected the dye into the pancreas. This is pretty common after an ERCP, and VERY painful. With pancreatitis it usually subsides in 3 days, during which they will have him on I.V. fluids, pain meds, and maybe some ice chips but no food. If it persists for 7 days or more (pretty uncommon), they will consider TPN for a few days until he recovers. TPN (total parenteral nutrition) is an "I.V. food", where everything he needs nutritionally in a day will be infused through a catheter implanted into a large artery in the chest. PPN (Periferal parenteral nutrition) is basically the same thing, except that it can be infused through the I.V. catheter he already has, and the PPN solution has a lower concentration of dextrose than TPN. PPN can be irritating to a small vein and sometimes painful, so it is used on a very short-term basis. TPN can be used as long as necessary, and people can even live on this exclusively for many years.
The doctors are doing things right as far as his pancreatitis goes, and everything they told you about it is true. He will most likely recover before they even have to think about TPN. Unfortunately, Diane's mother was already very ill and there were other circumstances involved in her situation. Almost no one dies from pancreatitis alone, but it sure is a horrible couple days to go through. The "cancer" sounds kinda fishy. It's a bit strange that the doctor can confirm cancer with negative biopsies, just from "seeing it before". I would definitely not accept that and seek out a second opinion as soon as possible.
I hope he's feeling better by the time you read this! I'm sure he will be back home before you know it- asking for french fries. ;0) I will check back here if you have any more questions! Good luck and God bless.
First, I think my mom died from lack of nutrition brought on by the pancreatitis. My mom was 75 pounds when she entered the hospital and they did not let her eat for four days. They then give her chicken broth that tasted lousy (she made me taste it), jello, tea, and juice for breakfast, lunch, & dinner for a week after. My mom doesn't like jello or juice. (I don't know what she weighed when she left the hospital.) When she got home, she would eat much less than she did before she entered the hospital. You know what it is like when you don't eat very much, you feel weak, and I think she got weaker and weaker because of the lack of nutrition.
The Doctors told me that they don't feed someone with pancreatitis because it is inflamed and it has to settle down. Food will make the person sometimes throw-up. My mom threw up once the first day they gave her the liquid breakfast.
The TPN gives someone nutrition through an IV like Cassandra explained. (She gives great advise.)
I don't know where you live or what your resources are, but if I had it to do all over again, years ago, I would have taken my mom to the Cleveland clinic.
If you read the letters from Shelly and Maria, they also had bad experiences with their mother's doctors. Keep searching for a doctor until you feel confident and explain to them the reasons for your concern.
You know, I still don't know what you should feed a person with pancreatitis. I read you should not feel them anything high in protien or high in fat. I did tell the Primary Care Physician 4 days before my mom died that no-one told me not what to feed my mom, and he told me it was because she did not have chronic pancreatitis and I could feed her anything. Then he changed the subject to tell me my uncle was in the emergency room at that moment and I never got back to the subject with my mom.
I wish you the best. It is a tough fight. There are some good Doctors that will help you. Keep searching. I pray for you and your husband.
Diane
The Doctors told me that they don't feed someone with pancreatitis because it is inflamed and it has to settle down. Food will make the person sometimes throw-up. My mom threw up once the first day they gave her the liquid breakfast.
The TPN gives someone nutrition through an IV like Cassandra explained. (She gives great advise.)
I don't know where you live or what your resources are, but if I had it to do all over again, years ago, I would have taken my mom to the Cleveland clinic.
If you read the letters from Shelly and Maria, they also had bad experiences with their mother's doctors. Keep searching for a doctor until you feel confident and explain to them the reasons for your concern.
You know, I still don't know what you should feed a person with pancreatitis. I read you should not feel them anything high in protien or high in fat. I did tell the Primary Care Physician 4 days before my mom died that no-one told me not what to feed my mom, and he told me it was because she did not have chronic pancreatitis and I could feed her anything. Then he changed the subject to tell me my uncle was in the emergency room at that moment and I never got back to the subject with my mom.
I wish you the best. It is a tough fight. There are some good Doctors that will help you. Keep searching. I pray for you and your husband.
Diane
Just wanted to say hi and thank you for your note! I'm so glad we were able to help you in such a difficult time. I hope each day will be a little brighter than the day before. Take care and God bless you!
I just wanted to say, thanks again for all of your help.
Diane
Diane
Dear Diane
First let me express my condolences to you for your mothers death. I stumbled into this page this morning and have read all the postings since your first one. I have many thoughts to what I have read from you and others who wrote back to you. I have been crying all the way through these and am having a hard time typing this. Diane I am so sorry about what you have gone through but maybe you can help me out. I found this page because my husband (52) was hospitalized yesterday with pancreatitus. Of course the first thing I did this morning was to run to my computer to look for information. And I found you. Please don't feel obligated to answer me back, but any information you could give me would be appreciated greatly. Following an ERCP Thursday (ERCP is when they put a tube down your throat into your bile duct and pancreas) my husband was released and by the time we got home was in intense pain and vomiting. (Diane, I let him have McDonalds french fries on the way home...nobody TOLD me and it wasn't on his instruction sheet NOT TO EAT! Hey, you're worried about your wonderful custard..and it probably DIDN'T come from Micky D's) I took him back to the hospital within an hour after calling his Dr. I found out yesterday that it was pancreatitus. I found out he can't eat anything. And I was told it would go away within 3 days. That is all I was told. He has intravenious fluids and antibiotics going into his IV. When I saw you talking about TPN and then someone said PPN,,Diane what is this? I DON'T KNOW.. Let me just give a little history so maybe you or someone else can help me. Diane, my husband (of only 3 years and only 52 yrs. old) was diagnosed 12/98 with cancer of the bile duct (cholangiocarcinoma). That was 15 months ago and we were told he had 3 months to live. If you remember the Walter Payton story, that is what my husband SUPPOSIDLY has. He was diagnosed over the Christmas holidays. He was admitted on Dec. 14 for jaundice from a severe reaction to Depakote his Dr. prescribed. On Christmas Day, the hospital wanted to release my husband because there wasn't a DOCTOR willing to stay and perform exploratory surgery because of the holiday. On Dec. 21st they had put drainage tubes into his liver to drain the bile because they couldn't figure out what was wrong with him. So on Christmas Day they wanted him to go home and capped the tubes. Within 2 hrs. he turned Septic and the bile went all thru his body. Now everybody there was in a panic..my husband almost died and they FOUND a doctor to perform exploratory surgery. The other drs. called him GOD, they REALLY did. Boy this is running long....I'll jump to the problem...Surgery was done..Dr. opened him up on Dec. 30th and closed him right back up..Dr. GOD came and got me, told me he had cancer of the bile duct, there was nothing anyone could do and that he had, at the most 3 months to live. I asked Dr. God only one question. I asked how he knew it was cancer since the biopsies had all been negative..and there was no mass or spot or anything. Dr. God told me that he saw it and that he had seen this cancer before and that was all there was to it. AHA a confirmed diagnosis..from Dr. Gods eyes and no pathology. Anyway, after the most horrible 16 months(very long story) my NOT dead husband is now in the hospital with this pancreatitus. Long story but I have VERY GOOD REASONS not to believe these Dr.s. They have covered up mistake after mistake for almost a year and a half. If someone or you Diane can tell me what I'm suppose to be looking for NOW...please help me. I DO NOT WANT MY HUSBAND TO CONVENIENTLY DIE FROM PANCRIATITUS! We have been fighting for so long now I think I'm running out of gas and I DON'T want to screw up now. If I did this to him because of french fries I'll jump off a bridge!!!!!!!!
Victoria
First let me express my condolences to you for your mothers death. I stumbled into this page this morning and have read all the postings since your first one. I have many thoughts to what I have read from you and others who wrote back to you. I have been crying all the way through these and am having a hard time typing this. Diane I am so sorry about what you have gone through but maybe you can help me out. I found this page because my husband (52) was hospitalized yesterday with pancreatitus. Of course the first thing I did this morning was to run to my computer to look for information. And I found you. Please don't feel obligated to answer me back, but any information you could give me would be appreciated greatly. Following an ERCP Thursday (ERCP is when they put a tube down your throat into your bile duct and pancreas) my husband was released and by the time we got home was in intense pain and vomiting. (Diane, I let him have McDonalds french fries on the way home...nobody TOLD me and it wasn't on his instruction sheet NOT TO EAT! Hey, you're worried about your wonderful custard..and it probably DIDN'T come from Micky D's) I took him back to the hospital within an hour after calling his Dr. I found out yesterday that it was pancreatitus. I found out he can't eat anything. And I was told it would go away within 3 days. That is all I was told. He has intravenious fluids and antibiotics going into his IV. When I saw you talking about TPN and then someone said PPN,,Diane what is this? I DON'T KNOW.. Let me just give a little history so maybe you or someone else can help me. Diane, my husband (of only 3 years and only 52 yrs. old) was diagnosed 12/98 with cancer of the bile duct (cholangiocarcinoma). That was 15 months ago and we were told he had 3 months to live. If you remember the Walter Payton story, that is what my husband SUPPOSIDLY has. He was diagnosed over the Christmas holidays. He was admitted on Dec. 14 for jaundice from a severe reaction to Depakote his Dr. prescribed. On Christmas Day, the hospital wanted to release my husband because there wasn't a DOCTOR willing to stay and perform exploratory surgery because of the holiday. On Dec. 21st they had put drainage tubes into his liver to drain the bile because they couldn't figure out what was wrong with him. So on Christmas Day they wanted him to go home and capped the tubes. Within 2 hrs. he turned Septic and the bile went all thru his body. Now everybody there was in a panic..my husband almost died and they FOUND a doctor to perform exploratory surgery. The other drs. called him GOD, they REALLY did. Boy this is running long....I'll jump to the problem...Surgery was done..Dr. opened him up on Dec. 30th and closed him right back up..Dr. GOD came and got me, told me he had cancer of the bile duct, there was nothing anyone could do and that he had, at the most 3 months to live. I asked Dr. God only one question. I asked how he knew it was cancer since the biopsies had all been negative..and there was no mass or spot or anything. Dr. God told me that he saw it and that he had seen this cancer before and that was all there was to it. AHA a confirmed diagnosis..from Dr. Gods eyes and no pathology. Anyway, after the most horrible 16 months(very long story) my NOT dead husband is now in the hospital with this pancreatitus. Long story but I have VERY GOOD REASONS not to believe these Dr.s. They have covered up mistake after mistake for almost a year and a half. If someone or you Diane can tell me what I'm suppose to be looking for NOW...please help me. I DO NOT WANT MY HUSBAND TO CONVENIENTLY DIE FROM PANCRIATITUS! We have been fighting for so long now I think I'm running out of gas and I DON'T want to screw up now. If I did this to him because of french fries I'll jump off a bridge!!!!!!!!
Victoria
sorry, it bumped the last part of who to and who from off the board.
First and foremost, I would like to apologize for not responding to you earlier. I read your posts and thought about them a lot, I'm jealous of Maria, I would have loved for my mom to have liked to have a garden, unfortunately, we had woods in our back yard and no sun. I want to put a garden in my yard this summer and don't know where to begin. I would also love to know something your mothers enjoyed Shelly and Sandy. It seemed like we all were very close to our moms and we all took care of our moms during the worst time. Cassandra, if your mom is still alive, would you please give her a big hug.
Today is exactly one month since she died. I have to say, every Saturday morning I think about each event that took place when it happened. Both today and yesterday were tough days for me. I really miss her and could use her advise on a lot of things.
Funny thing Sandy, you mentioned that a lot of people die alone in a nursing home. My mom's brother, who is 12 years older, (81) apparantly is taking her death hard too. She was his primary care giver and sole support. He's very nervous and is having a lot of bathroom accidents and I am working on getting him into a personal care or nursing home. One of the places asked me today if I could have him move in with me. I just don't have the energy to do it. I feel really bad and wish my mom could tell me what to do.
BTW: I noticed on Maria said she was afraid to give out her e-mail address on these boards. I signed up for a hotmail e-mail account and have tested to see if it could be traced the past couple of weeks. So far so good, I think there's some checkmark you have to check to make the info public. Anyway, if any one of you would like to write e-mail to me, the address is ***@****. That way I won't be taking up this board for my own personal messages.
I feel you all have been the greatest support for me (with the exception of my husband who has wonderful). I don't know if or how I would have gotten through this past month without you. The guilt of not doing as much as I possibly could have for her is being overshaddowed by how much I miss her and could really use her help.
To Angela: Thank you for the advice and thank you for telling me my mom probably loved the custard. (Unfortunately, the doctors didn't even order any ugly tasting green stuff for her to eat.) I agree there should be something done to stop other families from suffering like we did. I don't blame the hospital. I blame the onocologist at the hospital and my mom's primary care physicians. I think they did the most damage to her. I doubt I could do much good other than letting the doctors know how I think they could make it better for the next person. I also tell everyone to make sure to get copies of their reports and read them on the off chance the physician does not. I don't know if you read above, but my mom's uncle is sick now. I scheduled an appointment with his (same as my mom's) Primary care physician last week and the first available appointment is May 5th. Go figure. I'm not in the health care industry also, but I'm not so sure it doesn't have something to do with the "HMO Industry" as a whole either. I just wonder if the Doctor's are being too controled by the HMO's to care about their patients anymore. When I was little, the doctors seemed to care about their patients much more than most doctors do today and today there is much better technology, science and understanding of the health care than there was then.
However, in all fairness to doctors, there was a GREAT, AND I MEAN GREAT, primary care physician at my mom's HMO practice. He was my primary care physician and my uncles. He really cared about his patients. I tried to get my mom to switch over to him years earlier when her primary care physician didn't care about her stomach pains, but she didn't want to hurt the feelings of her current primary care physician (ironic, eh..). Unfortunately, the GREAT primary care physican left the practice, and my uncle and I got switched to my mom's primary care physician.
Once again, I apologize for taking so long to respond.
Diane
Today is exactly one month since she died. I have to say, every Saturday morning I think about each event that took place when it happened. Both today and yesterday were tough days for me. I really miss her and could use her advise on a lot of things.
Funny thing Sandy, you mentioned that a lot of people die alone in a nursing home. My mom's brother, who is 12 years older, (81) apparantly is taking her death hard too. She was his primary care giver and sole support. He's very nervous and is having a lot of bathroom accidents and I am working on getting him into a personal care or nursing home. One of the places asked me today if I could have him move in with me. I just don't have the energy to do it. I feel really bad and wish my mom could tell me what to do.
BTW: I noticed on Maria said she was afraid to give out her e-mail address on these boards. I signed up for a hotmail e-mail account and have tested to see if it could be traced the past couple of weeks. So far so good, I think there's some checkmark you have to check to make the info public. Anyway, if any one of you would like to write e-mail to me, the address is ***@****. That way I won't be taking up this board for my own personal messages.
I feel you all have been the greatest support for me (with the exception of my husband who has wonderful). I don't know if or how I would have gotten through this past month without you. The guilt of not doing as much as I possibly could have for her is being overshaddowed by how much I miss her and could really use her help.
To Angela: Thank you for the advice and thank you for telling me my mom probably loved the custard. (Unfortunately, the doctors didn't even order any ugly tasting green stuff for her to eat.) I agree there should be something done to stop other families from suffering like we did. I don't blame the hospital. I blame the onocologist at the hospital and my mom's primary care physicians. I think they did the most damage to her. I doubt I could do much good other than letting the doctors know how I think they could make it better for the next person. I also tell everyone to make sure to get copies of their reports and read them on the off chance the physician does not. I don't know if you read above, but my mom's uncle is sick now. I scheduled an appointment with his (same as my mom's) Primary care physician last week and the first available appointment is May 5th. Go figure. I'm not in the health care industry also, but I'm not so sure it doesn't have something to do with the "HMO Industry" as a whole either. I just wonder if the Doctor's are being too controled by the HMO's to care about their patients anymore. When I was little, the doctors seemed to care about their patients much more than most doctors do today and today there is much better technology, science and understanding of the health care than there was then.
However, in all fairness to doctors, there was a GREAT, AND I MEAN GREAT, primary care physician at my mom's HMO practice. He was my primary care physician and my uncles. He really cared about his patients. I tried to get my mom to switch over to him years earlier when her primary care physician didn't care about her stomach pains, but she didn't want to hurt the feelings of her current primary care physician (ironic, eh..). Unfortunately, the GREAT primary care physican left the practice, and my uncle and I got switched to my mom's primary care physician.
Once again, I apologize for taking so long to respond.
Diane
sorry to hear about the insensitivity about your mothers care.
I think you did far better for your mom than the "doctors" ever did. I think it was the mis treatment and not the food you fed her that killed her. Did you get anything in writing? Can you access your mothers records? Are there any reports that you have copies of with doctors diagnosis and or coraners report?
It might be what you need for a law suit.
The hospital and the doctor.
After you have gotten to that point. Right now you are grieving and no doubt not ready to fight any battles.
If there is nothing. Then perhaps you could think about making it your crusade to be an advocate for others who have families suffering. Your testimony. Finding available resources . Information etc. then giving those persons directions on how to care for there loved ones with these terrible diseases.
Write a letter to the doctor in the hospital that made those orders and let them write back and save the letter...thats documentation also.
File a grievance.
Ask kindly why those descisions were made, and what is the usual proceedures. Then file the grievence giving details and any documentations you may have.
Run an add in the paper of those certain doctors or particular hospital, and get together with those people and discuss the mismanagement of the sick and dying or deceased and file a formal complaint against said medical personel or doctor/s in charge. If your up to being agressive enough. Sometimes that can be exasperating too. I see the adds in the paper "looking for persons who have had been mismanaged healthcare at such and such a place. Please write to PO box , blah blah blah.
It makes me so mad to know that this type of thing goes on.
These sort of persons is what gives the name Medical or hospital or doctor a bum wrap/bad name!
I am not a medical professional, or law professional, just an average person with a family member with cancer and diabetes.
I found your message searching for symptoms I am having, and reasons why one doctor prescribed me Bentyl.
As for your actions. Don't worry. Your mom ate something good before she passed on, and it probably tasted mighty good!
My grandma told her best friend a week before he was unable to eat, (cancer brain tumor), to go ahead and eat the cadbury cookies she gave him anyways , and not to wait like his wife wanted (also her friend ).Wife wanted him to wait untill they went sight seeing which would have been the next week.
He LOVEd cadburys , if he hadn't ate them when he did, against Wifes request , he would never have had the chance to taste one before he died. But he did, and enjoyed every bit!!
Your mom got to taste some lovely custard. I am sure she would rather have had that than some ugly green stuff or gastly concotion the doctor might have ordered!
THE SMALL AMOUNT I DON'T THINK WOULD HAVE BEEN ENOUGH TO CAUSE ANY BLOCKAGE OR DAMAGE TO YOUR MOM. I think it was just her time to go. Think about it, if it were up to those (what I think sound like lousy doctors) your mom would have continued to starve to death (cruel to the last drop, and unecessarily so!).
I think you had paid back your mom in love and nurturing what she did for you several years ago when you were born. It's like reversing the roles. Returning the kindness and love. I can almost hear your mom saying ,"Thank you Diane for taking care of me my last days on earth. Thanks for feeding me, the custard was nice"!
It probably isn't really your mom , just my heart speaking.
I am a Mom too, and I think that If I were in your moms place that's what I would have been thinking!
Angela
I think you did far better for your mom than the "doctors" ever did. I think it was the mis treatment and not the food you fed her that killed her. Did you get anything in writing? Can you access your mothers records? Are there any reports that you have copies of with doctors diagnosis and or coraners report?
It might be what you need for a law suit.
The hospital and the doctor.
After you have gotten to that point. Right now you are grieving and no doubt not ready to fight any battles.
If there is nothing. Then perhaps you could think about making it your crusade to be an advocate for others who have families suffering. Your testimony. Finding available resources . Information etc. then giving those persons directions on how to care for there loved ones with these terrible diseases.
Write a letter to the doctor in the hospital that made those orders and let them write back and save the letter...thats documentation also.
File a grievance.
Ask kindly why those descisions were made, and what is the usual proceedures. Then file the grievence giving details and any documentations you may have.
Run an add in the paper of those certain doctors or particular hospital, and get together with those people and discuss the mismanagement of the sick and dying or deceased and file a formal complaint against said medical personel or doctor/s in charge. If your up to being agressive enough. Sometimes that can be exasperating too. I see the adds in the paper "looking for persons who have had been mismanaged healthcare at such and such a place. Please write to PO box , blah blah blah.
It makes me so mad to know that this type of thing goes on.
These sort of persons is what gives the name Medical or hospital or doctor a bum wrap/bad name!
I am not a medical professional, or law professional, just an average person with a family member with cancer and diabetes.
I found your message searching for symptoms I am having, and reasons why one doctor prescribed me Bentyl.
As for your actions. Don't worry. Your mom ate something good before she passed on, and it probably tasted mighty good!
My grandma told her best friend a week before he was unable to eat, (cancer brain tumor), to go ahead and eat the cadbury cookies she gave him anyways , and not to wait like his wife wanted (also her friend ).Wife wanted him to wait untill they went sight seeing which would have been the next week.
He LOVEd cadburys , if he hadn't ate them when he did, against Wifes request , he would never have had the chance to taste one before he died. But he did, and enjoyed every bit!!
Your mom got to taste some lovely custard. I am sure she would rather have had that than some ugly green stuff or gastly concotion the doctor might have ordered!
THE SMALL AMOUNT I DON'T THINK WOULD HAVE BEEN ENOUGH TO CAUSE ANY BLOCKAGE OR DAMAGE TO YOUR MOM. I think it was just her time to go. Think about it, if it were up to those (what I think sound like lousy doctors) your mom would have continued to starve to death (cruel to the last drop, and unecessarily so!).
I think you had paid back your mom in love and nurturing what she did for you several years ago when you were born. It's like reversing the roles. Returning the kindness and love. I can almost hear your mom saying ,"Thank you Diane for taking care of me my last days on earth. Thanks for feeding me, the custard was nice"!
It probably isn't really your mom , just my heart speaking.
I am a Mom too, and I think that If I were in your moms place that's what I would have been thinking!
Angela
Dear Diane,
My sincere condolences for the loss of your Mother. I too lost my Mom from pancreatic cancer in October. She had been diagnosed with breast cancer 3 years earlier and had undergone radiation and a lumpectomy and was declared cancer free. The radiation was terrible for her. She never got her full strength back. Then a routine blood test revealed that the cancer had returned somewhere in her body. She called to say they were scheduling a catscan. The catscan showed a mass the size of an orange on her pancreas, a couple of nodes on her liver and some areas on her lungs.
She had a bypass of her stomach procedure by a gastro surgeon. (Not a Whipple procedure). He said it would improve the quality of her life. He gave her 3-6 months, but we never told her of course. She spent 3-4 weeks in the hospital and we nearly lost her then. Her doctor indicated that she would make "many" trips to the hospital during the course of the disease. She was 77 years old and she and my dad had been married nearly 60 years. After the intensive care unit and the over zealous doctors, she opted not to do anything. She wanted to stay home to die. I stayed with her as her primary care giver for the 3 months she lived after her diagnosis.
Death is not pretty, nor is it easy. Don't ever believe what you see in the movies. I made plenty of mistakes as her caregiver, but certainly learned a lot. Her primary doctor let her go as a patient when we opted to call Hospice. Some doctors do not understand the concept, probably because they are there to save lives. Hospice personel were a wonderful support to our family. They exist primarily to help the person die in comfort and for the family to understand the process. I am still learning. I would urge you even now to contact a nurse with a hospice or go to your library and get a book on death and dying. Don't beat yourself up. Your Mom was lucky to have a loving and caring family with her to the end. So many people die alone in nursing homes. God bless!
We all have to face our own mortality sooner or later. My prayers now are that I will have the same courage my parent had
My sincere condolences for the loss of your Mother. I too lost my Mom from pancreatic cancer in October. She had been diagnosed with breast cancer 3 years earlier and had undergone radiation and a lumpectomy and was declared cancer free. The radiation was terrible for her. She never got her full strength back. Then a routine blood test revealed that the cancer had returned somewhere in her body. She called to say they were scheduling a catscan. The catscan showed a mass the size of an orange on her pancreas, a couple of nodes on her liver and some areas on her lungs.
She had a bypass of her stomach procedure by a gastro surgeon. (Not a Whipple procedure). He said it would improve the quality of her life. He gave her 3-6 months, but we never told her of course. She spent 3-4 weeks in the hospital and we nearly lost her then. Her doctor indicated that she would make "many" trips to the hospital during the course of the disease. She was 77 years old and she and my dad had been married nearly 60 years. After the intensive care unit and the over zealous doctors, she opted not to do anything. She wanted to stay home to die. I stayed with her as her primary care giver for the 3 months she lived after her diagnosis.
Death is not pretty, nor is it easy. Don't ever believe what you see in the movies. I made plenty of mistakes as her caregiver, but certainly learned a lot. Her primary doctor let her go as a patient when we opted to call Hospice. Some doctors do not understand the concept, probably because they are there to save lives. Hospice personel were a wonderful support to our family. They exist primarily to help the person die in comfort and for the family to understand the process. I am still learning. I would urge you even now to contact a nurse with a hospice or go to your library and get a book on death and dying. Don't beat yourself up. Your Mom was lucky to have a loving and caring family with her to the end. So many people die alone in nursing homes. God bless!
We all have to face our own mortality sooner or later. My prayers now are that I will have the same courage my parent had
Reading the last post reminded me of something. After my mother received her good news I remember one of the hospital doctors coming in and saying, "well there's nothing else we can do for you" and sent her home. A couple of months later when she was at her oncologists office he said something like "you don't seem very optimistic". They told her there really was nothing they could do for Pancreatic Cancer and she pretty much accepted the news. How optimistic did they think she would be? She went through the radiation and the chemotherapy but she certainly didn't have her hopes up. They really need to try to teach these doctors what it is like to live with a death sentence. My best to you all. May each day be a little easier than the day before and I hope for a cure so that no one else has to go through what we have been through!
To Diane, You have no idea how similar our situations are.My mom started with a lump on her tongue and weakness on her left side.She went to her dentist who suggested she go and have the lump removed.She went into N.Y to have the surgery and was told not to worry she was cancer free! We were so relieved to hear him say those words.That was in April she passed away in Sept. of that same year.She recovered well from the surgery but still had the weakness on her left side.I called her reg. Dr. and told him what was happening and he said considering that she had the cancer in her tongue she probably had it elsewhere.I was devastated.I took her for some tests and they found that she had squeamous cell carcinoma in her lung.I made a appt. with her oncologist and was told (again)don't worry your mom isn't going anywhere!I took her for radiation treatments everyday and did whatever the Dr. told me (thinking all the time he knew best).I wanted my mom back the way she was.She was becoming very tired and didn't want to eat much anymore.I called her oncologist and questioned him about her state at the time and he responded with , and I quote "what do you expect from someone with terminal cancer".After screaming at the Dr. I hung up the phone and threw up.How could I tell my family this.We all thought she was going to be o.k.Now we were told she was dying.Thats when we got rid of her Dr.She passed away about three weeks later at home with all of us around her.She was 56 years old.She was buried on my birthday.I miss her so much.She wasn't only my mom but she was my best friend.Ifeel an emptiness inside that Iguess will never go away. Your not alone in your pain.It's been six years since I lost her but it seems like yesterday.The last words my mom said to me was I love you and let me go.She didn't want to stay here anymore,she was in too much pain.Sometimes I think maybe I was being selfish trying to keep her here.I just loved her so much I didn't want to let go.I think both my mom and yours are in a much better place than we are and that someday we will see them again.I don't know if that comforts you at all but just know your not alone in your grief. God Bless Shelly
Hello Diane,
I'm so sorry that you're having such a hard time. You sure don't have to apologize for being gloomy, you've been through a lot. Things will get better, just take it a day at a time and let yourself grieve. You can't feel guilty about feeding your mother the wrong things or not doing research about her condition. When someone is that ill they can only eat what they can tolerate- if anything at all. You gave her what you thought was best, but there's no certain food that could've made her better. If you were at home doing research instead of being at her bedside, you would feel terribly guilty for not spending more time with her in those last precious days. You have nothing to feel guilty for, and if anything, I would give yourself a pat on the back. Just from what you wrote I could tell how much you love your mother, and the special relationship you had with her. It's only natural to look back and ask yourself what you could've done different to change things, but everything you did- you did out of love. I know it hurts right now because everywhere you look there's memories, and your heart aches for her. It will take time, but soon those memories will make you smile.
It saddens me to think of how the doctors treated your mother, like they gave up on her long before she lost her fight. She had to be very malnourished and it was pure negligence. The only bad thing when you go on TPN- you have to have a central venous catheter inserted into the superior vena cava, the artery near the heart. TPN has to go into a large artery because the solution has such a high concentration of dextrose, which would really damage a small vein. Nowadays, inserting a catheter is done at the patients bedside without sedation, considered a simple procedure. Even if they found inserting a catheter a dangerous move for her which I doubt, they could've done PPN. This is where they run it through a regular IV catheter, with a lower dextrose concentration. Maybe if you talk to this doctor about your feelings of anger, what he did wrong, and what he could do different in the future, it may bring you some closure. Sometimes doctors lose sight of what really matters- the patient's feelings and the family's concern for their loved one.
I hope things get better for you, I wish there was something I could say to ease your pain. I will be checking back here if you need to talk. Take care!
I'm so sorry that you're having such a hard time. You sure don't have to apologize for being gloomy, you've been through a lot. Things will get better, just take it a day at a time and let yourself grieve. You can't feel guilty about feeding your mother the wrong things or not doing research about her condition. When someone is that ill they can only eat what they can tolerate- if anything at all. You gave her what you thought was best, but there's no certain food that could've made her better. If you were at home doing research instead of being at her bedside, you would feel terribly guilty for not spending more time with her in those last precious days. You have nothing to feel guilty for, and if anything, I would give yourself a pat on the back. Just from what you wrote I could tell how much you love your mother, and the special relationship you had with her. It's only natural to look back and ask yourself what you could've done different to change things, but everything you did- you did out of love. I know it hurts right now because everywhere you look there's memories, and your heart aches for her. It will take time, but soon those memories will make you smile.
It saddens me to think of how the doctors treated your mother, like they gave up on her long before she lost her fight. She had to be very malnourished and it was pure negligence. The only bad thing when you go on TPN- you have to have a central venous catheter inserted into the superior vena cava, the artery near the heart. TPN has to go into a large artery because the solution has such a high concentration of dextrose, which would really damage a small vein. Nowadays, inserting a catheter is done at the patients bedside without sedation, considered a simple procedure. Even if they found inserting a catheter a dangerous move for her which I doubt, they could've done PPN. This is where they run it through a regular IV catheter, with a lower dextrose concentration. Maybe if you talk to this doctor about your feelings of anger, what he did wrong, and what he could do different in the future, it may bring you some closure. Sometimes doctors lose sight of what really matters- the patient's feelings and the family's concern for their loved one.
I hope things get better for you, I wish there was something I could say to ease your pain. I will be checking back here if you need to talk. Take care!
To Diane,
Dear Diane,
My mom spent so much of her life doing for others and doing without for herself. She finally retired about 12 years and spent her summers at her home in the Catskill Mountains in New York doing what she loved to do, gardening. She came to live with me after receiving her horrible diagnosis and stayed here for about 6 months. Her final month was spent in the hospital just waiting to die. I so much wish she had more time to do the things she liked to do. She was 74 years old when she passed away and I'll miss her for the rest of my life. We tried to get hospice to come out but since we were not close to public transportation that was probably impossible, anyway my Mom felt so sick the same day that we spoke to hospice and asked to go to the hospital. I suppose it is selfish of me but I am glad she died there and not in my house. I have a hard enough time looking at her bed and reliving her cancer at least I don't have to look at it and relive her death. Her visiting nurse was absolutely wonderful, she answered all my mothers questions and always made her feel important. And, so was her oncologist. I'd leave my EMAIL address, but I am not comfortable leaving on a board like that. I check in every once in a while to see if there is anyone that I might be able to help. We had such a hard time getting my mother diagnosed. She went from one test to another over a 3 month period. Her doctor in the Catskills told her there was nothing wrong with her and she should see a nutritionist. I had her transported down here and within a couple of days she got the horrible news. Darn! Good luck to you, I'll check the board from time to time. Let us know how you are doing and please don't dwell on what you could have done or what you did wrong. Remember, the important thing is that you tried!
My mom spent so much of her life doing for others and doing without for herself. She finally retired about 12 years and spent her summers at her home in the Catskill Mountains in New York doing what she loved to do, gardening. She came to live with me after receiving her horrible diagnosis and stayed here for about 6 months. Her final month was spent in the hospital just waiting to die. I so much wish she had more time to do the things she liked to do. She was 74 years old when she passed away and I'll miss her for the rest of my life. We tried to get hospice to come out but since we were not close to public transportation that was probably impossible, anyway my Mom felt so sick the same day that we spoke to hospice and asked to go to the hospital. I suppose it is selfish of me but I am glad she died there and not in my house. I have a hard enough time looking at her bed and reliving her cancer at least I don't have to look at it and relive her death. Her visiting nurse was absolutely wonderful, she answered all my mothers questions and always made her feel important. And, so was her oncologist. I'd leave my EMAIL address, but I am not comfortable leaving on a board like that. I check in every once in a while to see if there is anyone that I might be able to help. We had such a hard time getting my mother diagnosed. She went from one test to another over a 3 month period. Her doctor in the Catskills told her there was nothing wrong with her and she should see a nutritionist. I had her transported down here and within a couple of days she got the horrible news. Darn! Good luck to you, I'll check the board from time to time. Let us know how you are doing and please don't dwell on what you could have done or what you did wrong. Remember, the important thing is that you tried!
Dear Diane,
I was saddened to read your posting regarding your mother's illness. Pancreatitis can occur in patients who do not drink alcohol and who have had the gall bladder removed. Possible causes for the pancreatitis include medications and the result of other ilness. Often, however, we do not identify the cause for the pain.
Usually, the pancreatitis is limited in duration and does not cause indefinite symptoms. From your posting, I am uncertain how the diagnosis of pancreatic cancer was made. Although patients can have 2 different cancers this result is not common. You should ask your mom's doctor to explain whether the diagnosis of pancreatic cancer is confirmed or merely presumptive.
AS mentioned , the pain of pancreatitis usually subsides. Narcotics like Duragesic are used when the pain persists.
I was saddened to read your posting regarding your mother's illness. Pancreatitis can occur in patients who do not drink alcohol and who have had the gall bladder removed. Possible causes for the pancreatitis include medications and the result of other ilness. Often, however, we do not identify the cause for the pain.
Usually, the pancreatitis is limited in duration and does not cause indefinite symptoms. From your posting, I am uncertain how the diagnosis of pancreatic cancer was made. Although patients can have 2 different cancers this result is not common. You should ask your mom's doctor to explain whether the diagnosis of pancreatic cancer is confirmed or merely presumptive.
AS mentioned , the pain of pancreatitis usually subsides. Narcotics like Duragesic are used when the pain persists.
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