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Dear John-Your mom

miss maggie
Posts: 929
Joined: Mar 2010

Dear John, I did respond to your post about your mom. I wanted to make
a separate post for you to read. I am pasting a copy below.

So sorry John
Dear John

First, let me say, how sorry I am on your mom's passing. Since losing my mom my life is
not the same anymore. Losing one's parent is horrible.

I read and re-read your post. I noted your doctor's advice. Your mom would not
suffer if the ventilator was removed. Sorry to ask, what do you mean they LIED??

I just requested from my doctor a PROXY Form> I want to make clear my wishes if ever
the time comes. I have asthma, and in the past suffered from being out of breath, gasping
for air. I want to make it clear, under no circumstances would a ventilator be removed.
If I am in a coma, even brain dead, if I am on a ventilator, it is not to be removed.
It would be perfedtly alright to stop all food feeding. But, never, never remove a
ventilator. I cannot imagine being conscious, unconscious, in a coma struggling for air.

When my bowel perforated in Sept 2009. The cause was NHL. I was in ICU for one week on a
ventilator. I was completely out of it. I believe when they removed the ventilator, I was
somewhat unconscious, in never, never land. I still remember flaring my arms, opening
my eyes looking for someone to help me. I couldn't breathe. I saw and heard all the
people around me staring at me, telling me to calm down. I will neve forget that experience.

If this is what happened to your mom, I am so, so, very sorry. If I brought up bad memories,
that too I am sorry.

Maggie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Maggie,
FIRST OF ALL,THANKS FOR YOUR CONDOLENCES.
I know what you mean about your mom and life not being the same. My mother was my twin sisters whole life. Their lives have drastically changed. I live in another state but I called her every Monday night while she was in the nursing home. She had to go there because she had emphezema and it was progressing rather quickly. The Dr. recommended it because if she would get a cold it could be deadly for her. She was mentally there 100%. Her condition worsened to the very late stages and she could not catch her breathe even with the oxygen so she was placed in the hospital. They had to put a ventilator in. She was still fully aware of what was going on. After a few days it was said that the ventilator was doing its job but her lungs were still failing. The Drs. said they had done all they could and they would have to release her to a nursing home,but not back to where she was. They talked about some down town facility she would have to go to die. Heartless Drs. to say the least. They told us she was suffering and highly recommended removing the ventilator. We were against it. They insisted she was suffering and it would be be best. Even said if it were their loved ones they would do the same thing.We questioned them about removing the tube if she would suffer. They said no she would just close her eyes and go peacefully. We still did not know what to do. They still insisted she was in pain and was suffering. The medicine she was getting was helping to mask some of the pain. She was fully aware of us when we came into her room. They said no,but we knew she was pretty much there. The Drs. started getting an attitude with us because we would not agree to what they wanted to do. We even asked them again if they were sure she would not suffer if the tube was removed. They gauranteed it. We finally agreed. Part #1

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I think my posting time was running out so I had to put this in 2 parts.
They insisted she would just go to sleep because they would give her some medicine to relax her. They removed the ventilator and right away she started gasping for air. My sister said,,"You said she would not suffer." The BASTARDS turned and walked out of the room with no response. She gasped for air for what seemed to me for 45 minutes. I walked out to the desk and said you said she would just go to sleep and not feel anything. They turned their back with no response. I am glad I wasn't in my younger days or when they did that I guess I would have been arrested for assault or maybe worse.THATS WHAT I MEANT WHEN I SAID THEY LIED!!!!She fought to the very end. We felt like idiots not to mention how we felt emotionally.
I went back to her room about 1/2 hour after the Dr. had come in and pronounced her dead then he turned and walked out of the room with nothing else to say.Would you believe they had cleaned her room and were pushing another patient in already. The medical thing is getting scarier all the time. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
Your story gave me cold chills! My mother had emphezema, but it didn't cause her death. She was on oxygen right to the end, but a massive heart attack took her quickly and relatively painless...or so the doctors said. She had numerous breathing episodes that were very scary to watch...(much like Maggie shared). I'm so sorry this happened and it's criminal for the doctor to say your mom wouldn't suffer, when indeed she did. Thank you for sharing, as I know how hard it must have been to relive those final days with your mom. My heart hurts when I hear such things have happened. What also hurts is knowing this stuff happens more often than we would like to think. Keeping your niece Jen in my prayers. Love...Sue (FNHL-2-3A-6/10)

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

John,

First I am so very sorry that you lost your Mom. Losing a parent is always so hard regardless of their age or ours. My deepest sympathy to you and your family.

The doctors that treated your Mom's final moments the way they did are truly terrifying. I am so sorry that this happened to you and you family. What a painful experience.

I agree- this medical stuff is awful. Sometimes I pray that we are all just friends and the lymphoma thing is gone. I think I'll keep praying for that!

Love ya,

Donna

scuttlebug11's picture
scuttlebug11
Posts: 175
Joined: Jun 2011

i am so sorry about you mom, and the painful way she had go. sometimes i feel docters have seen so many things they don't think about it. it wil be 3 years this january and still miss her, but i know i wlii see her again and she won't be suffering blessings denise

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Donna,
I think we all have the same prayer. John

miss maggie
Posts: 929
Joined: Mar 2010

Dear John, first, you sent me a private message. I couldn't open the message.
Please help.

John, I am shaking so much after reading your post. I have to calm down before responding
to your post. Not only that, my friend had minor surgery, and i am leaving to stay at her
house until tuesday.

I can only say, this terrible thing that happened to your mom is behind you now. I hope the nightmares are gone. I am sure where ever your mom is, she understands and knows you had
no idea.

Please forgive for me signing off. Love Maggie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Maggie,
I guess the night mares will never go away. So many things remind me of it. It was just this past April this all happened. I did not post anything on the board because at the time I was being reported as offensive by someone and having my post removed. I did not want to write anything that was not cancer related. As far as opening the private message I think you just have to click on to it. You may have to go to the left of the screen and click on to csn member e-mail. I do not get to many private messages and I can not remember how to do it. I am sure someone here knows better than I do. I will try to send it again and see what happens. John

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Thanks everyone for your responses. I hope none of you ever have to experience anything like this. Unfortunately as most of you are aware it goes on all the time. There has been great strides over the years in medicines but the medical field has become a very profitable business over the years gone by.Just take a look at your medical and medicine cost. It's a real shame!!! John

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi John,
I too had to take my mom off of the ventilator, she didn't die of cancer. My mom died of the swine flu two years ago. She also gasped for air but not like your mom, my mom lasted about 10 min or less but I still cry when I remember how she couldn't breath and she just looked at us. I think I feel the worse because I was the one that had to make all of her medical decisions for her. I wish I would have asked more questions but everything happened really fast, she was fine one day and all of a sudden in a months time she was gone. She spent two weeks in isolation and the last two weeks in the ICU asleep because the Dr's didn't want her to be awake. What the Dr's told me was that if I didn't take off the ventilator her lungs would explode and she would be in more pain. The Dr's also told us that they would give her medicine and that she wouldn't feel anything, but that's a lie because I know my mom did suffer at the very end.
I did talk to all my brothers and aunts and they all agreed that according to the Dr's that was the best decision. I still don't know till this day if that was the best decision, the only thing I know is that she's gone and is in heaven because my mother was a good person that helped anybody that was in need. My mom was my best friend, I miss her like crazy..
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

I'm so sorry Liz! The thought that you John and others went through this horrible ordeal is heart breaking. Yes...your mama is now in heaven and in God's warm embrace, which can't help but bring a little comfort. My mother and father are both gone, and my dear sweet grandmother who I adored...miss them like crazy also. Take care sweetie and have a good week.
Much love...Sue (FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

And anyone that read my message:

I am so very sorry for the out pouring of responses and bad memories coming to the
surface again. I had no idea so many of you found yourselves with this terrible
decision. As Sue said, "it brought cold chills." Sorry Sue, sorry I upset you.
As if you and all of us don't have enough on our plate.

My best friends, my mom, and my beloved, my husband passed away so peacefully. I was by
there side when they took their last breath. I never had to make the decision of taking
anyone off a ventilator. Yes, I can understand being haunted by your decision. But, please
know all of you who made the decision, you trusted the doctor's advice. I too would of done the
very same thing. Gaby, I am so sorry you suffered with lack of oxygen as I did. Don't you
agree, it's something you will never forget.

When I first read John's words "they lied", I had no idea it was as bad as John wrote. I
found myself unable to answer right away. I was so sorry for John's pain, and the fact
he had to witness his mom's passing in such a terrible way. Then to read Liz's mom's
passing in the same way. It was too much.

Liz and John. What is most important, you were good to your mom when they were alive. You
did the very best out of love. You just didn't know. I thank you for posting your experience.
It gives everyone something to think about. Let me say, in 100 years or so.

I never filled out a health proxy. I didn't realize it was so simple. I just filled out mine.
I also will give pause to any advice from any doctor. Example being: I had an abdominal ultrasound in Oct 2011. The results stated "there is prominence of the pancreatic duct which
measures up to 2 mm in diameter. If clinically indicated this may be further evaluated with
CT." The results were sent to my internist, and oncologist. I didn't hear from them. As I
always do, I received my copy of the results. I called my internist and insisted on a pet scan, or a ct scan. Yesterday, Nov 14 I had a MRI, MRCP whatever that is, MRCP that is.

God bless all. Thank you John, Liz, and Gaby for posting your experiences.

Love Maggie Remission from NHL, Jan 2011. DX Sept 2009

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Thank you Miss Maggie for your kind words, I will keep them close at heart.
Please receive a Huge hug from me, God Bless you.
Sincerely,
Liz

truckingalong
Posts: 444
Joined: Aug 2010

John,

I am sorry for your loss. I know how that is because I lost my mother last April in hospice. She was given morphine then passed away peacefully (without the ventilator). Now my father is working on his will and making sure that I don't let him suffer. So thanks for sharing your story and others' stories. Now this makes me think of my own will - eek - I am not ready to do this yet!! One thing at a time, I guess.

Let the good memories of your mother shine on you.

Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Liz,
Thank you and everyone else that responded. Its hard to believe it will be a year before long. John

gpespinosa's picture
gpespinosa
Posts: 25
Joined: Aug 2011

Maggie,
As I was reading your post regarding your experience it was like a horrible flashback. Right after my lung surgery it was very apparent I was having a hard time breathing but the nurse did not even bother checking on me even after my family was expressing there concerns for over two hours. It wasnt until my mom heard another doctor speaking spanish that she was able to run to her and pull her to my room and have someone pay attention to me. I truely beleive if it had not been for my mother staying with me and that spanish speaking doctor I would have passed that night. They rushed like 10 doctors in and started working on me. I have such a vivid memory of that. Not knowing if I was dead or alive, not knowing what the heck was going on. I tried to scream and gasp but nothing came out. I was heavy medicated but I was still able to hear everyones voice and see their shilottes. The feeling of not breathing is the worst feeling in the world! Apparantely I was swinging my arms as well during the ordeal and then was punished as they claim I was a safety hazard to myself and tied my arms down to the bed for about 3 or 4 days. I spent 8 days in ICU, they tired 4 different times to take the tubes out but had to put them back shortly after because I still couldnt do it on my own. Around the 5th day in the hospital is when I was told about the cancer. In a way the horrible experience helped ease the news, I believed I only asked 3 questions; what stage, when do I start my chemo, and can I still go home tomorrow. I am a firm believer in my faith and that things happen for a reason. I have never really questioned my faith with cancer, in a way I like to joke with my family and say I am taking one for the team, but I constantly question why I had to go through such a painful and horrible experience.

Gaby

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Gaby,
My father had prostate cancer in 1995 and it was in the late stages. I could tell another horror story he had to experience,but I won't. I am no stranger to hospital horror stories. The story of my father is just too depressing. You would not believe what the Dr. told me to do when my father was in so much pain. Hope you never have to go thru any experience like you did before. John

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

John, so sorry for your loss. Your story gave me chills, so not right! Take care my friend..........

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