need answers for dying mom

[Diane]

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 (pancreatitis).  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’s ideal weight was 90 lbs.  She was down to 75 pounds when she entered the hospital.  They did not allow her to eat or drink for 4 days.  They sent her home 12 days ago  and said there wasn’t anything they could do.  

Is there really nothing I can do?  Should I not feed her anything fatty?  What should I feed her?  Is there any antibiotic I may be able to give her?   I know nothing about this disease other than what I read on the Internet.  (Unfortunately I don’t have much time because I am at her home most of the time taking care of her.)  She was not in bad shape until the pancreatic pain hit her bad.  She has always had stomach pain very bad.  She took a lot of Darvon’s and other painkillers when she was about 35 years old for this stomach pain.  No one was ever able to pinpoint the reason for her pain.  I just wonder if she always had this pancreatitus (pancreatitis) her whole life.  We found out about her lung cancer when we took her to a Digestive Disorder Center for her stomach pains in Oct. 98.  The first thing the Doctor did was take a CAT scan and called her with the lung cancer results and we never went back to him.  

She also is on the Duragesic patch for the pain.  It is the lowest dose, and it has drugged her up so much she doesn’t speak and is very lifeless.  I talked to the manufacture of this patch and they felt that she should be on a different pain medication especially because of her low weight.  Because she is so drugged up, I don’t think I could get her to take any pills at this point.  

She is my mother and best friend and I love her very much and want to do anything I can for her.  I’m sure she will die any day now if I can’t come up with anything.  Her Primary care physician has given up and doesn’t like me bugging him anymore.

[HFHSm.D.-Gastro-rf]

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.

[sue]

Diane,

I was a pancreatitis sufferer.   NO you do not need to be diabetic, etc. to have pancreatitis.   I was born without the main common duct and did not have problems until my early 40's.  Please take a few minutes to read my story - I think you will find it helpful with your mom's case.  I would be happy to answer any questions you may have.  You will need to type in the web address to access my story.  I ended up having my pancreas removed to get rid of the pain and stop malnutrition.  It's been over 2 years now and I am not a diabetic nor do I have chronic pain anymore.

www.insulin-free.org/stories/rebello.htm

email:  ***@****

God Bless your mom - I know the severe pain she is living with.

Sue

[wendell]

Hello Diane:

If you'd like to e-mail me directly, there is an excellent herbal product which will allow you to get some badly needed nutrients into your Mom.

Pls. let me know if I can help.

Best wishes,

Wendell    < ***@**** >

[[e-mail]]

THAT IS VERY WRONG,HE ISN`T A VERY  GOOD DOCTOR
IF HE WONT HELP GET A NEW DOCTOR THAT CARES WHEN YOU
FIND ONE HE WILL HELP AND BE HAPPT TO

[shelly]

Dont let your moms doctor push you off. My mom died of cancer about six years ago.I know how you feel. I had to keep calling her DR. and he kept telling me she was just having side effects from the chemo. but she was really dehydrated.I brought her to the E.R.and they admitted her .She had no appetite ,her stomach was bloated and she had no energy. I switched her D.R. that day.Hang in there. God Bless.

[Jane Tripp]

I am very sorry for your terrible trouble.
I urge you strongly to purchase from your local health store a product named ESSIAC. This product has been curing cancers, even in the late stages since the 1920's. It is prepared in the form of a tea and is easy to prepare and take.Please, please, check this substance out by punching in the words ESSIAC or RENE CAISSE CANCER CURE into your internet search engine. Read everything you can and then BUY SOME! It will at the very least ease some of your mothers symptoms and/or pain. Also check into OXYGEN THERAPIES. The time has come to forget traditional Western medicine - it has certainly forgotten your poor mother.
My life was saved by a wonderful Doctor of Chinese Medicine, Dr. David Bo Jhong, in Vancouver, Canada. Acupuncture combined with Chinese herbs and other therapies can indeed save lives, even in cases of cancer, and will at least alleviate suffering. Forget your so called "doctors" - you need alternative health care very quickly:
1. Purchase Essiac - begin TODAY
2. Find a good natural health practioner - I suggest a Doctor of Chinese Medicine who will do home visits. Begin acupuncture etc.
3. Get out your Yellow Pages and call health stores for advice. They may have good advice and some will certainly be able to recommend suitable local practioners.
4. Purchase or pick up free (often) copies of alternative health magazines for information, advice and local contacts.
5. Consider some form of Spiritual Healing as back up.
6. Search the internet for info.
7. Pray, because it really helps.
You could probably arrange most of this in one day. I wish you fortune and God Bless you and your mother.

[Karen]

Your mom has probably had some food sensitivites most of her life that went undiagnosed and untreated.  I can't tell because your info is incomplete, but plese don't give her antibiotics.  IThey will only make her stomach more irritable and cause more problems.  If her bowels aren't working well, she may have a blockage somewhere.  Feed her on slippery elm powder and marshmallow tea.  Mix it together with some licorice of you can get if from your health store. Get some vitamins into her with juices, fresh carrot and celery - just let her sip it. Rub her tummy with chammomile oil diluted in 10 mls of olive oil, put that into a bath for her and get her to drink chammomile tea.  Get chammomile homeopathic 30c and give that to her every half an hour.  You could do with a few doses as well.  Nothing here will harm her, but may help to soothe the pain.

[Diane]

Thank you for all of the advice.  I actually went to the vitamin store to buy essiac, but they were out.  

She really deteriorated this past week hard and fast and this morning she died.

[shelly]

DIANE,                                                                   I,M SO SORRY ABOUT THE LOSS OF YOUR MOM.I LOST MY MOM ALSO AS YOU MAY REMEMBER READING IN MY COMMENT TO YOU.IT IS A HARD TIME TO GET THROUGH BUT YOU SOMEHOW FIND THE STRENGTH TO LIVE YOUR LIFE WITHOUT THE PERSON THAT KNOWS YOU THE BEST. MY MOM WAS NOT ONLY MY MOM BUT SHE WAS MY BEST FRIEND.WE WILL MISS THEM TREMENDOUSLY BUT WE WILL GO ON. THE PAIN OF YOUR LOSS WILL NEVER GO AWAY BUT YOU WILL LEARN TO LIVE WITH IT. TAKE CARE AND GOD BLESS.    SHELLY

[To Shelly from Diane]

Thanks for sharing your story with me.  It seems like we both have a lot in common except I was never smart enough to switch my mom's Doctor.  He actually missed the boat in the summer of 1998 when she went to him and complained of difficulty breathing, climbing stairs, excessive coughing, etc.  She went to him about 4 times in 2 months and finally asked him if he would take an x-ray to see if she had pnemonia (pneumonia).  He agreed and told her she was fine.  (The radiologist's report said there was a "patchy infultrate that should be examined further".)  She could barely walk in October - (3-4 months later) and we took her to the digestive disorder's center.  The doctor wanted to get a cat scan and called my mom to say that she had the lung cancer he scheduled her with an onocologist's appointment the next day.  My family kept saying the x-ray she had taken never showed anything therefore it must be in its early stages.  When I went to the hospital to pick up the x-ray and saw the radiologis's report, I was floored.  I let my mom's primary care physician know how upset I was.  He told me that she always made everything sound as if it wasn't critical as it was.  I informed him that she had been there 4 times in 2 months and that in itself was unusual.  (Besides, people don't usually schedule appointments with their doctor unless they aren't feeling well.)  He went on to tell me he was not afraid to prescribe my mom any narcotics for her pain.  (I guess he was trying to make me feel better, but I really never understood those comments.)  My mom always liked this doctor and never quite understood his mistake.  (I think she blocked it out of her mind.)  I decided to let her keep him, because I kinda felt I had an upper advantage.  I was wrong.  When she went into the hospital for the pancreatitus (pancreatitis), they wouldn't feed her or give her TPN.  I begged to every doctor and nurse.  I should point out she went to her primary care physicians hospital and not her regular onocologist's hospital.  One onocologist would come into the room and say she doesn't have long to live and then would take me out and say that he was worried why my mom was so depressed.  He told me he wanted to give her an anti-depressant in her IV.  (He also did the same thing to my brother.)  I asked for the TPN and he said he couldn't do that because of her pancreatitus (pancreatitis).  (It was 7 days without food.)  I told him what about some type of vitamins.  He said okay and he also give her the anti-depressant in her IV.  When we left the hospital, I asked the nurses if my mom had ever gotten the anti-depressant or vitamins, they said no.  (What was the point of him making a big deal out of it 2 days to me and one to my brother if he wasn't going to do anything anyway.)  They even disconnected her IV in the hospital one day when I got there.  I asked my brother why and he didn't know.  I then when and asked the nurses why and they said it was doctor's orders.  When I asked which doctor, they couldn't tell me who.  After 10 minutes of panicking, I said nevermind, I would call her primary care physician's office.  They said nevermind, they were putting it back on.

     When we got home from the hospital, I fed my mom egg custard made with half & half, cheeze, anything with high fat and protein.  Then I read here that those things were bad for my mom.  I didn't know what to feed her and quickly deteriorated the last week.  I still question myself if I did everything I could do.  (I guess that's why I come here everyday, so finally see what the doctor's response would be.)

     I always believed the doctors had their patients best interests at heart.  I don't believe that anymore.  I think it is politics.  I think they didn't want to help her with the pancreatitus (pancreatitis) because she was dying anyway.  I think it took too much money out of their pockets (via hmo insurance) to keep her alive.  My mom's primary care physician called me when I asked for the TPN at home, and he said he only helps living, he doesn't know how to help the dying and I should get the hospice, not him.  I told him Kevorkian went to jail for killing terminal patients.  He said he wasn't in the same category as Kevorkian.  I told him I agreed, Kevorkian helps patients who have terminal illnesses and WANT to die, he (her doctor) doesn't allow the patient to have a choice.

     Sorry this is so long.  I miss my mom very much.  I have a hard time going to a grocery store and seeing the foods I fed her the past few months.  There is so many things that remind me of her and I can't get it out of my mind.  She was my best friend.

     Thank you for trying to help me.  And thank you for the second time to know I am not alone.  I know you loved your mom very much too.

         Diane

[cassandra]

Hi Diane,
I read your story and was touched by your post, I can't even imagine the pain you must be feeling. Your mom was so fortunate to have a daughter and best friend as caring as you. Just know you did everything you could and she knew that too. Don't beat yourself up about not changing her doctor, he made some very serious mistakes- not you. It's difficult to question their treatment because WE don't know what's best, we count on them in our most vulnerable times to make crucial decisions for our loved ones. I think he made such serious mistakes that it might even be malpractice. I'm not a doctor, but I think my comments might give you something to look into. I think the x-ray (showing the infiltrate) should've been diagnosed as cancer much sooner, and followed up on immediately. Along with the symptoms she was having the doctor should've put the pieces together. His comment "she makes everything sound not-critical" seemed like he was covering his butt, not to mention his comment about narcotics to change the subject and distract you. From what I read about pancreatitis (and a friend on TPN who has it) you cannot eat when you have it because the pancreas needs rest, that's why they put people on TPN. The doctor may have lied to you about that. In the very least they should've had her on IV vitamins, if they did the IV fluid would be bright yellow. Your suggestion about vitamins was great, not followed up on even though he agreed. I don't know if this is the reason they didn't put her on TPN, but it costs about $700.00 a day. Even though she was dying they should've done all they could to sustain her life, especially when pancreatitis is something that will improve. If she was dying from the cancer I could maybe see why they didn't use supportive measures. The doctor was very insensitive in his comment he "only helps the living". What if that was his mother? His attitude is disgusting. Please don't beat yourself up about not changing the doctor, he took advantage in your most painful time and there's no way you could see this with all you were going through. We have to put our trust in them because we are not doctors, but he abused that. Your mother knew (and still does) that you love her and did everything you could, you were standing beside her and caring for her when she needed you most. You can bet she's very proud of her daughter and she will be watching over you. God bless you.

[To Cassandra from Diane]

I can't help beating myself up and crying for my mom every couple of hours.  I feel really guilty for feeding her the wrong foods when she returned from the hospital.  I also hate the doctors who never gave me instructions on what to feed her.   Hate is a strong word, but I really do.  I actually think she died from malnutrition more than I believe she died from the cancer.  (I think the cancer overtook her body because there wasn't anything there to fight it.)

     She was doing so good except for the stomach pain (and over-medication of pain killers as a result of the stomach pain) and went to the hospital.  The gastro-internist doctor was great.  He talked to her like she was a living human being, like she was.  The other doctors (one from the Primary Care Physician's office and the onocologist) treated her like she was already dead.  They would talk to us like she wasn't in the room and talk about her dying.  Both my brother and I at separate times asked the one primary care physician's office doctor not to talk that way in my mom's room.  She told my brother she felt my mom had to know.  I really think they just wanted to make her give up on living.  My mom's Primary Care physician never came to the hospital, just the doctor's from his practice.

     I think they were tired of paying for the cat-scans, doctors, hospital bills, chemotherapy, x-rays and wanted her to die.

     Her Primary Care Physician did call me on my cell phone about a half-hour into the viewing at the funeral home.  He gave me his sympathies and told me his mother had died of lung cancer about 10 years earlier (I can't exactly remember how long it was but I think it was 10 years.)  Given my age and his age though, I'm sure his mother was much older than 69.  

     I do believe it is pure malpractice.  I don't really know if it is because of his pure neglect or if it is a result of the HMO's.  I don't know how they really work, ie. if they are making the doctors work much harder than ever or not.  I would sue in a heartbeat if I thought it would prevent someone else from ever having that fatal error or if it could bring my mother back.  I did point out to him on 2 separate occasions what he did and I hope it will make him read his reports more carefully and pay attention to his patients more carefully.  

     I talked with an aunt who is in the convent tonight and she told me my mom is beside me now in spirit.  I hope so because I really need her as much as she needed me.  

     My mom and dad were divorced, but he still loved her very much.  At the funeral, I was sitting in front of him crying and I heard his wife whisper John.  I turned around and he was broke out in a head-to-toe sweat and his eyes were behind his head.  I shouted dad, dad, and the minister stopped the ceramony and we called 911.  He was alright, but it scared me.  The minister wanted to stop the service, but my dad wouldn't let him.  We were to go to the cemetary after the service, but the minister changed it so everyone would stay and eat at the church.  My brother, husband, & I were the only ones who got to go to the cemetary.  My brother cleaned off her casket and finally broke down and cried.  

     I wish I could stop crying.  I wish I would wake up in the morning and not think about her being dead and all of the things I need her for or will never be able to do again.  I know time will heal the pain.

     I'm sorry.  I'm not normally this gloomy.  It really helps me to get the pain out.  I also want people to know to keep trying and searching for the answers to their health problems, and not to trust the doctors (like you said, we count on them when we are the most vulnerable) if you don't feel it is right.  Luckily, my husband was very supportive of me in my quest of trying to help my mom.  Both he and his boss were wonderful, and have even commented that they want me on their side if they ever get sick.  If I was stronger, rather than staying with my mom at the hospital night and day, I would have probably done better to search to find out what was the best treatment for pancreatitus (pancreatitis) and if TPN was allowed, and went to a lawyer and insisted on it.  Then maybe I'd be a little more at peace too.

     Thanks for writing Cassandra.

[Dear Diane,]

Based on the information that you provide, there is no evidence for pancreatic cancer.  Pancreatitis can occur in the absence of alcohol use and after gall bladder removal.  

The pain of pancreatitis will usually subside over several days.  Some patients have chronic pancreatitis and these individuals may receive narcotics e.g. Duragesic patch or demerol.  If your mother is oversedated, you should ask the doctor to try other medications e,g, codeine, darvon, vicodin.

Best of luck

[Maria]

I am so sorry to hear about your mom.  My mother passed away in June from Pancreatic Cancer.  I know what you mean about going to the store.  You spend so much of your time trying to find something they will eat and that is good for them that when they are gone it leaves such an empty feeling.  Please don't think you did anything wrong.  You did what you could.  You tried to nourish your mother with food that you thought would be good for her.  Unfortunately, if she did have PC there was absolutely nothing that could be done.  Oh, you'll hear about the miracle cures but let's face it miracle or not when someone has lost so much weight and so much of their strength, not even a miracle will help. I wish you the best. It will take time to be able to live with such a loss.  It's been 9 month's for me and most of the time I am able to deal with it. When I least expect it, I will all of a sudden just start crying.  It's so sad.  I'm so sorry.

[Jill]

My father was incorrectly diagnosed for pancreatic cance in January of 91.  At the time he had pancreatitis.

However, two years later he was diagnosed again and this time a biopsy was done to make sure.  As soon as the results came back he moved to an oncologist.  He had radiation and chemo and although he had a terminal disease he had a wonderful illness.  His care was truly managed by the oncologist and he was very comfortable.  He was diagnosed in April of 93, started the treatment right away.  His chemo was given via a port that was inserted in his right shoulder.  He wore a  fanny pack and the tube ran from the device in the fanny pack under his shirt to the port and right into his artery.  

He would go to radiation and then play golf.  He built a room at my house and did some remodeling in their home.  

Oncologists are not like other doctors.  They are experienced with the terminal part of the diagosis and at least in our family's experience, the kindest and most honest of everyone we have dealt with between both of our parents.

I would encourage you to find a good oncologist.  As you probably know, everyone is a specialist that you get sent to, you see that doctor once and on you go.  You never get to know anyone or build any type of friendship.  But the oncologist is different and they want the patient to be comfortable and we found that he actually was treating all of us along the way.

You should also contact hospice.  At the end of my dad's life we were able to keep him at home because we had hospice.  They helped with a hospital bed, medications, bathing, etc.  We had the patch also but they also got us a liquid medication that we could use give him under the tongue so that it would be absorbed.

Another thing they helped us with was when my dad did pass on they handled everything and signed the death certificate so that we wouldn't have to call 911.  They said that if they came, there would have to be an autopsy etc.

I would very strongly recommend hospice.  They were a live saver for all of us.

[To Maria from Diane]

I'm so sorry you lost your mother too.  My husband & I were in the grocery store last night and waffles were on sale and he wanted to know if I wanted them.  They were one of my mom's favorite food & I really couldn't believe he asked me because we never buy waffles.  

     My husband & I also moved late last October and my mother never got to see my new house.  I prepared as much as I could in November for my in-laws to come for Thanksgiving, and then the Christmas holidays arrived.  In January it got so cold here, I didn't want my mom to go outside.  She never got to see my house.  I still have most of everything packed in boxes.  The hardest thing is now it is time to start to decorate (pictures, etc.), & I don't know what to do.  She would have been a great help.  She was so good at that stuff.  

     You are right.  The last 2 days of her life, I if there was a miracle cure, that it would be too late.  I think you get so desperate you want to try anything.

     I get the idea that maybe you are visiting this site too to find out more information for your mother.  My whole life I never realized just how hard life is without your mother.  

     What was your mom like?  If it wouldn't be too hard or stressful, I'd like to know.

         Diane

[To Jill from Diane]

Thank you for the information.  Unfortunately my mom died one week after I wrote this.  I just keep visiting this site because I think I need some closure as to whether or not I did all that I could have to help my mom.  (I sometimes think I should go to the mental forum if they have one.)

     My mom's original (lung cancer) onocologist was the greatest.  He was at the Pittsburgh Cancer Institute and was excellent.  He and the whole staff were wonderful.  I even had the memorial contributions sent to them.  I would highly recommend them to anyone and everyone.

     However, when my mom got the pancreatitus (pancreatitis), she went to her Primary Care physician's hospital.  The onocologist there was a joke.  (At least it makes me laugh thinking about how awful this Doctor was.)

     My brother's did send for the hospice about 3 days before my mom died.  I was against it because you were not allowed to call 911 and I had heard you were not allowed to have the patient on IV fluids.  (I feel if nothing more, IV should be considered a comfort measure.)  I was pleasantly suprised the hospise allowed the IV.  (I wish I could also have had the TPN, but was never allowed that option.)  

     I have to laugh at the statement you said about the hospise signing the death certificate by not calling 911.  They told us that too.  They also told us that if we called 911, then they would be required by law to give those shocks (whatever they are) to bring back my mom.  As it turned out, the morning my mom died, she looked very ill to me at 3:00 a.m. and I had a pretty good feeling she was going to die soon.  I told her I would miss her and I didn't want to see her suffer, so if she wanted to die I would see her someday.  At 7:30 a.m., the hospise nurse called to say she was too busy to come over that day, but the bathing girl would come.  At 7:45 a.m. I called my brother to come over.  At 9:00 a.m. the bathing girl came.  While she was bathing my mom, she turned her to her side and my mom's nose was completely covered by the pillow and I kept holding the pillow down so she could breath.  Then my mom threw up and quit breathing.  My brother ran to give her CPR.  He then said to call 911.  I said we weren't allowed to because of the hospise.  He said he didn't care.  The medics got there and everyone knew she was dead except for my brother.  I finally said to my brother "to let her go".  They never gave her the "shocks" and they NEVER GAVE HER AN AUTOPSY.  When we went to the funeral home, that was something on the list of things you could get, but it wasn't necessary.  

     I guess that's one of the things they tell you to ease your mind, or maybe my mom was just an exception.

     Thanks for trying to help.... does the pain ever get easier?

             Diane

[Maria]

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!

[shelly]

To Diane,

[cassandra]

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!

[shelly]

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

[Maria]

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!

[Sandy]

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

[to 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

[To Maria, Shelly, Casandra,Sandy]

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

[...and Angelia from Diane (it didn't tak]

sorry, it bumped the last part of who to and who from off the board.

[Victoria]

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 (pancreatitis). 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 (pancreatitis). 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 (pancreatitis). 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

[Cassandra to 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.

[Cassandra to 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!

[To Victoria by Diane]

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

[To Cassandra from Diane]

I just wanted to say, thanks again for all of your help.

Diane

[Victoria]

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 (pancreatitis) 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

[Cassandra to 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.

[Victoria]

Dear Diane,
My husband came home from the hospital today. Pancreatitus (pancreatitis) 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

[To Victoria by Diane]

Best of luck.  I hope you will get all of the right answers.  Please let me know.  I'm still saying prayers.

Diane

[Joy E. to Diane]

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.

[Jeanette]

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.

[Jeanette]

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.

[To Jeanette from Diane]

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

[Maria]

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.