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Old 07-03-2002, 01:55 AM   #1
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barto31 HB User
Post End of life questions, I am in MA brother in Florida dying, please read

Hi, I hope someone might read this and be able to help. First, I am in Massachusetts and my brother is in Florida dying of cancer. He is in a VA medical facility so they are not allowed to give out information over the phone etc, my only contact is with my sister in law and I am not sure if I am getting all the facts. Four years ago my brother had throat cancer went through intensive chemo etc....and made it, however within the past 4 months he has had terrible headaches/back pain. He was admitted to the hospital approx. 3-1/2 weeks ago, at first they discovered he had urine in his kidneys/then found out he had a blockage in his ureatha (spelling) he went through intensive test, they were going to operate to open up his ureatha but then during the cat scan discovered 90 percent of his body had cancer back and a tumor the size of a plum in his brain. They cancelled his operation as they did not think that he would make it and the cancer would overtake his body. He has been moved into the hospice floor of the hospital. I have spoken with him, via phone, and he has said his good-byes and told me he knows he is not going home and this would be the last time he spoke with me, when talking with him he told me about seeing my Mom and Dad (who have passed in the past two years), and many other visitors - family members - and others he did not know ( who have also passed) he said they come through his walls daily and he knows they are ghosts and not afraid. They have handed out the hospice book to the family members "Gone from my sight". He is on morphine on a patch and hourly liquid dose, and another medication for his head as he complains about the pain all the time. My sister in law tells me he has begun to eat a little and drink a little and they have taken him off his IV. She also told me that he took a short walk down the hallway. I guess my main question is when one is near death, can you actually eat and walk? - Esp.when one is on such high doses of morphine. Again, this information was passed on to me from Florida and I do not know what is truth, what is not. I am not looking for medical advice at this time, just wondering if anyone has had a situation regarding end of life and actually how the person behaves. To me eating and walking don't seem right. Thank you any and all who answer in advance. Judie

 
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Old 07-03-2002, 02:33 AM   #2
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niecsey HB Userniecsey HB User
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myself and partner befriended an old lonely man last year, l cooked meals tidyed up my man done odd jobs, a few months later it came as a shock to learn he had lung cancer, later on when he was in hospital the day before he died my man fed him ice cream and the poor angel enjoyed it even though he was on morphine etc the morphine wears off quick especially as your body gets used to it thats why they up the dose, when they stopped his drips etc l thought it was awful and why someone so special and had just found us who cared deeply for him should be treat in this way, its part of the course of treatment. l really feel for you right now and im so sorry for your impending loss, he was slipping in and out of conciousness but he knew who was there and he did talk, ive heard of other people having the 'ghost's' experiences and i think it brings comfort to those who are passing. lm thinking about you and you brother take care http://www.healthboards.com/ubb/heart.gif

 
Old 07-03-2002, 07:31 AM   #3
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Bartos31,,,MAY GOD BLESS YOU AND YOURS
I reside maybe close to that va hospital,, western palm beach county. Did you call the hospital, if your sister in law oks it, you can retrieve all the info youd like.

 
Old 07-03-2002, 12:51 PM   #4
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Thank you BeautifulMess for the message, I personally didn't check into it but my sister in law told me it was against all VA Hospitals to give out information regarding the patient except to the "immediate" wife, children ect. One of the nurses however, told me that it was at my sister in laws request that family from Massachusetts calling in are not to be informed that only she would update us. I am his sister however and living in Massachusetts makes it so hard to get "correct" information from her. I am not know in a position to fly down there. I just feel so frustrated at this point and somewhat betrayed. My only hope is that she does call me (I HOPE) when he does pass away. Thank you so much for your words, and sorry if my words carry anger and I just feel so frustrated being so far away. "Bless Judie

 
Old 07-04-2002, 08:46 AM   #5
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Quote:
Originally posted by barto31:
Thank you BeautifulMess for the message, I personally didn't check into it but my sister in law told me it was against all VA Hospitals to give out information regarding the patient except to the "immediate" wife, children ect. One of the nurses however, told me that it was at my sister in laws request that family from Massachusetts calling in are not to be informed that only she would update us. I am his sister however and living in Massachusetts makes it so hard to get "correct" information from her. I am not know in a position to fly down there. I just feel so frustrated at this point and somewhat betrayed. My only hope is that she does call me (I HOPE) when he does pass away. Thank you so much for your words, and sorry if my words carry anger and I just feel so frustrated being so far away. "Bless Judie
Dear Judie,
Sorry to hear about your bother. I would also be feeling quite frustrated with your sister-in-law? I wonder why she won't let you talk directly to the nurses there? Must be a Control thing.....?

You ARE his sister and i would think that would make a difference on getting information on his condition. could you possibly talk to his Dr. in charge of his care?
Sending you positive thoughts and prayers.
Hang in there.
Nancy
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Nancy

 
Old 07-04-2002, 08:50 AM   #6
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Quote:
Originally posted by barto31:
Thank you BeautifulMess for the message, I personally didn't check into it but my sister in law told me it was against all VA Hospitals to give out information regarding the patient except to the "immediate" wife, children ect. One of the nurses however, told me that it was at my sister in laws request that family from Massachusetts calling in are not to be informed that only she would update us. I am his sister however and living in Massachusetts makes it so hard to get "correct" information from her. I am not know in a position to fly down there. I just feel so frustrated at this point and somewhat betrayed. My only hope is that she does call me (I HOPE) when he does pass away. Thank you so much for your words, and sorry if my words carry anger and I just feel so frustrated being so far away. "Bless Judie
Dear Judie,
Sorry to hear about your bother. I would also be feeling quite frustrated with your sister-in-law? I wonder why she won't let you talk directly to the nurses there? Must be a Control thing.....?

You ARE his sister and i would think that would make a difference on getting information on his condition. could you possibly talk to his Dr. in charge of his care?
Sending you positive thoughts and prayers.
Hang in there.
Nancy
__________________

Nancy

 
Old 07-04-2002, 09:14 AM   #7
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BeautifulMess HB User
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Hi Judy, first and foremost , I agree with the previous poster with the control issue. What I would attempt, is to not only ask the wife to please allow you to have contact with atleast your brother. If he is up and eating and taking some steps, he should be able to talk on the phone with you. My aunt is in the hospital with colon cancer, and able to retrieve calls from anyone, shes in ky and i in florida. You may try calling the number to the VA hosp he is in, ask the switchboard operator for his room number info so that you may send flowers, cards, etc. Then usually when you have the room and/or bed number, you can redial the main line and enter the bed# followed by room#, if not maybe the switchboard operator would give you the info on how to dial straight to his room. Also I would suggest if this fails and even so if you succeed, attempt to gain the info on his primary and oncology dr, even if it is at there office address, or even the hospital, just always , no matter where you are sending your mail, always address to the dr him or herself, and in bold letters at bottom put 'PERSONAL AND CONFIDENTIAL', maybe even 'intended for addressee only'. That way , no one can open this mail other than the dr, explain to them the situation and ask to be kept in form of all situations at hand..,... I feel so sad for your situation.... keep strong, positive, and VERY ADAMANT and settle for nothing less than what YOU and YOUR BROTHER deserve. God Bless You

 
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