Feeling Extreme Guilt Ove THe Loss Of My Mother

by Tina
(Hattiesburg, MS)

I'm going to give a very condensed version of what transpired of the course of the year from time of diagnosis to time of death.

My mother was diagnosed with Stage IV non-small-call lung cancer April 27, 2011. We researched and found an oncologist that we thought would be good for her. She has 12 rounds of radiation and 13 rounds of chemo initially. They did scans and she was doing well. They continued with the chemo for a couple of months. Next scan showed it was no longer working. SO on to the 3rd chemo...alimpta. Supposed to be some sort of a miracle drug. It didn't work at all on my mother. At this point I'm considering switching physicians as I'm losing confidence in her current dr. I talked to her about it and she didn't want to switch. So, we started her on a 4th chemo regimen....Tarceva. Tarceva started out being a bad drug with terrible side effects. Her breathing became very labored. We had to keep her on oxygen 24 hours a day after she started Tarceva. If just went from worse to terrible from this point. Scans came back with bad news and we're all just left wondering what we should do.

I feel totally helpless. None of the decisions I'd made to this point has any long term lasting affects. They made her feel better for a while and then stopped working. I don't know what to do now.Tarceva is an EGFR inhibitor. Tarceva caused her to have Interstitial lung disease (ILD), essentially an inflammation of the lungs that appears to be directly causally related to Tarceva, but when it happens, continuing on an EGFR inhibitor makes things worse, and stopping it is probably the most reliable way for things to improve (they don't always, unfortunately).

Doctor wants to keep her on Tarceva. Either way, whether there's some progression or EGFR inhibitor-induced ILD, holding the Tarceva for some time seems like a sensible approach to me, though her physician didn't agree with.

I told her doctor that she needed to be referred to a pulmonologist to have the Interstitial lung disease (ILD) treated. It's treated with high doese of steroids in a hospital setting. Her doctor didn't think it was necessary and never made the referral.

So here's the guilt that I feel. I should have stepped up made the decision to have this appointment made and got her treatment.

Because at the end her problem wasn't that the cancer was killing her.... it was of course.... but at the time her bigger problem was that she couldn't breathe becuase of the Interstitial lung disease (ILD)that the Tarceva caused.

She died on Thursday, May 17, 2012 of Acute Respiratory Failure. I was holdinig her hand when she took her last breath. I just can't get past the fact that there were probably so mamy other treatments I could have gotten for her that may have helped extend her life more. I just feel like I made some mistakes and ended up costing my mother her life earlier than it would have ended.


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Jul 30, 2013
My Guilt is so bad I want to die...
by: Anonymous

Tina, I am so sorry you are going through this and I hope and pray that you are doing better. My grief has recently turned completely unbearable, and the guilt is literally killing me. My beloved mom, my soul mate, died of cancer earlier this year. I was the only caregiver for her the last months of her life. I know that she had advanced cancer and that I couldn't cure cancer, but I still feel I somehow caused her to die of it. I particularly blame myself for making bad choices or mistakes, like with her meds. She had been given anti-acid pills after her hospital stay, and after a few months, being off the ibuprofen, we thought it was ok to stop, at least for a while (knowing longterm taking of these is not good either). Down the line, mom had unresolved nausea and her onc admitted her to be checked by a gastroentorologist; he found pylori infection and ulcer, gave antibiotic and Prevacid 2X's a day. I gave these to mom, but now my memory is plaguing me and I am questioning whether I gave the whole bottle of Prevacid to her or stopped short. Why would I not finish the bottle if I knew she had an ulcer? And afterwards, did I keep giving the one pill a day she was originally given? This is killing me. What if I was 'playing doctor', thinking I was helping mom, without consulting her onc? And what if this caused her, inadvertently, to die? When she quickly took a bad turn, in hospital, they found the cancer was 'all over her liver and bones', and she still had Pylori, but I don't remember them saying an ulcer. Or do I not remember, was it resolved? I feel like I failed her in all kinds of ways. How can I live like this and ever move on? I feel like I died with her.

Apr 27, 2013
Left feeling angry over my mom's medication
by: Doreen U.K.

Jennifer you had a rough time with Doctors administering drugs with side effects. As a result you are left with hurt and anger that this caused your mother's death asking the ? why did they give her a drug that could kill her? I have heard so many people ask similar ?'s. It seems so unfair that the one's left have to pick up the pieces, and are left with anger they can't get rid of. Sadly this is happening more and more. You are not an isolated case.
Here in England we watch TV programmes where such wrong is exposed. Due to lack of funding and resources cheaper medication is given rather than one that is more beneficial. There are Chemo's that are gentler on the system with less side effects that are so expensive only rich people can afford this treatment. Doing research on the internet I came across 2 Chemo drugs that should never be used. Alimta and Cisplatin. And also Carboplatin. My husband all 3 drugs. I am left feeling that I wished he was never given Chemo. We put our lives in the hands of doctors thinking they have our best interest's at heart. While some do, the drug companies descend on doctor's and if there is money to be made you can bet the doctor's will go with the drug companies. Then there is the hierarchy (FDA) and also the government who puts the squeeze on doctors and often their hands are tied and they can do little but co-operate with what they are told to do. Some doctors will speak out and be ostracised as a result. Many doctors in England are frustrated. They want to get on with doctoring and the government brings in new rules and their hands are tied. In 2005 my husband was neglected by our doctor. I fought a hard battle right to the top and challenged the doctor's lies. My husband could have died in 2005. I was so angry. All I wanted was better medical care for my husband. The doctor eventually came to our home and admitted mistakes were made and he took responsibility. That is when my anger left me. BUT. Sometimes there is a cover up and not so easy to expose medical negligence so many people like yourself is left holding the anger. Doctor's should be held responsible and accountable. Try and get the answers you need so your anger can be placed on the right people. Best wishes.

Apr 26, 2013
My mom was lost to Tarceva as well
by: Jennifer

Tina, I can so relate to your story. My mom has lung cancer as well, and was diagnosed as being in remission after chemo and radiation. Her oncologist started her on Tarceva, and things went downhill from there. When she started complaining of being short of breath, he said "it's all part of it." Never addressed the fact that it could be a side effect. She was hospitalized for one month to the day that we made the decision to end life support. She had developed ARDS and the cause of death on her death certificate is listed as Tarceva. I am so angry while grieving. Why would they give her a drug that could kill her? Please email me if you would like to touch base with me. Thanks, Jennifer jennijo600@yahoo.com

Mar 14, 2013
mother with alzheimer's
by: me

My Mother had Alzheimer's I would feed her and she would. Forget that she had already eaten so she would always be asking for food and I would tell her that she had already ate and when it's time to eat again then I would give her to eat to make a long story short she died due to complications in the hospital but I fill that it wasn't her time I fill that the Dr made a mistake I fill very strongly about this but now I fill guilt for a few things I think that I should have told the Dr why was he trying this N that that my Mother was not to be tested on to see if this would or that would work I just keep thinking what if this or what if it wasn't her time I know that my Mother Believed in JESUS and I know she will live forever spiritually but I miss her physically being here I Loved and Love her so much. ( I could go on but I will stop and send this off God Bless You All

Dec 12, 2012
My Heart is Broken
by: Doreen U.K.

Dear Anonymous You are not responsible for the death of you mother even if you are a nurse. If God had given your mother these commands then I think your mom would have listened to God who was the most important person in her life. God came first and any prompt from God would have made a difference. She didn't love any of you (her children) any less. Just differently. LOSE YOUR GUILT. This is a normal part of grief but it is not REALITY. REALITY says You asked your mother to take what was offered her by You and her doctors but she was emphatic. She said NO. If you didn't ask the rest of the family what they thought was appropriate at that time. It may have caused more division or CHAOS. You took on the responsibility knowing and doing the right thing at that time. It is only after the event that we can think differently and questions will pour into the mind and cause us instability. If you feel that you can discuss this with the rest of the family and tell them how you feel, I am sure they will agree that you did your best at the time. When we are faced with a difficult situation we can't think of every little thing we should be doing. You are only Human. Your mother made a CHOICE. She made her own decision about what she wanted. You would have had to RESPECT her CHOICE even if she died sooner as a result. I hope that you will be able to be supported well by your family and friends and you will eventually Heal from your Loss.

Dec 11, 2012
by: Anonymous

My mother told me that the doctor told her that she needed a pace maker. I told her that she should get the pace maker if the doctor thinks she needs it. She emphatically stated "no" shaking her hands, geting real upset. I told her that God works through doctors. Still no. I didn't mention it again. Somehow It left my mind. A couple of years later she had a stroke. Her doctor called the whole family in telling us what should be done for her. She never mentioned CHF. Just that she needed Coumadin. She said my mother would get mad at her and not come back. The pacemaker never came back to my mind until a year or so later immediately after she died. Why didn't I notify the other family members? Why didn't I insist on the pacemaker? I am now suffering under intense guilt. Why did she tell me this if she wasn't going to do it? She also said her doctor wanted her to take coumadin before her stroke. I tried to tell her she should take it . No was her answer. She was depending on God and her health Foods for her healing. Why did she tell me these things if she wasn't going to comply? I'm a nurse, All these things I should've known. I feel that I let my mother die.

Sep 21, 2012
Same with my mum
by: Anonymous

Tina, my mother just died too and I know it was because her oncologist gave her too high tarceva drug. I am disgusted. I know we could of had her here longer. She was doing so well

Jul 26, 2012
Sorry about your loss!
by: Ilana

I lost my mother in 2010 from ovarian cancer. She was only 68. I keep going over and over in my head if only...She was a nurse and either she was in denial and kept the truth from us or she knew and didn't want us to see her suffer. Shortly before she was diagnosed, I noticed that her stomach looked distended, but I was afraid to say anything to my mother because she might have taken it the wrong way and thought I was telling her she was fat. She was always tired and lacked energy. I told her to see a Doctor, but she refused to listen to me. It was not until a month later when she was throwing up repeatedly and got dehydrated that she sought medical attention. It was too late. Five months later and after three chemo's, I lost my mother. We can keep saying "what if", but the fact of the matter is what's done is done and we have to move on. I can blame the hospital for giving my mother the infection that eventually took her life by not removing her catheter sooner, but that wouldn't bring her back. It took me two years and endless counseling sessions to realize this.

Jul 24, 2012
Don't Do It
by: Ella in Texas

Hello Tine

I share the feeling as so the other members of this group. My mother died June 8, 2012 andI too watch her pass. I often think IF I had taken her to the ER sooner, mother MIGHT still be with me. As the the other members stated, Tina there is a time to live and a time to die, no one can predict these events but GOD.....You did your best with what you had presented in front of you. Grieve and remenber and cherish the times that you and your mother shared, that's what she would want you to do.....The guilt will only make your grief more difficult.....I will prayer for you and you do likewise. God hads a plan for you, just remenber that....Take care

Jul 24, 2012
Dear Tina..
by: jazzAnonymous

we share the same name, and I too lost my mother just a year ago. I also feel like there is so much I could have done which could have prevented her death. I learned we all have a time to be born and a time to pass on and when God has written it is our time to depart, there is nothing no one can do. Dont feel guilty, you were there holding her hand, I too, was at my mothers bedside. I too go over and over in my mind how I could of done this or that. Losing your mom is a painful experience as we all only have one mom, and when shes gone we feel like a part of us has died too. Remember her, cherish memories of her and become the best you can be in spirit. She will always be in your heart and though it is so difficult, in time you learn to live with it. You are not to be blamed for anything... lots of hugs to you. To me, you sound like an amazing daughter, and I am sure your mother knew that :)

Jul 24, 2012
Feeling Extreme Guilt over the loss of my mother
by: Doreen U.K.

Tina I am so sorry for the loss of your mother. You seem to have done very well being so involved in your mother's treatment. Here in England things have changed. WE can seek second opinions but we more or less trust our Oncologists that they know what they are doing. My husband was diagnosed with a rare and serious form of lung cancer caused by working with Asbestos. It is an inoperable, incurable, aggressive cancer. Steve died 10 weeks ago on May 5th 2012. Steve was ill throughout the 3yrs.39days. I cared for him. Steve was given the usual ALIMTA CISPLATIN. and the second round was ALIMTA CARBOPLATIN. Looking on the internet I discovered too late that these are the worst forms of Chemo and should not be given. All the ONcologists do is buy you time. It is also in the Oncologist's favour to prescribe Chemo. A lot of money is to be made for each referral. I guess there is a lot we don't know that happens behind the scenes. Even if doctors or Oncologists want to get on with the job of caring for the sick their hands are tied by the hierarchy and beauracracy. Government intervention often keeps doctors from getting on with the job of doctoring. Governments interfere too much and make changes. I don't know about America. But here in England this is happening a lot and a sign of the times things are changing for the worse. The only good thing is that our loved ones are at rest. But still unfair because they could have lived a better quality of life. I know of a friend who received a gentler form of Chemo that is very expensive and the church members paid for this. over $15000.00 She didn't suffer the serious side effects that others go through. If one can pay for private treatment it is better. My husband was told he couldn't have an operation. We will never know. In England some districts can't even get the Chemo drug. It depends if the health authority can afford to pay for it. It is called POSTCODE LOTTERY. If you live in the right area you get the drug. If you don't you are denied this. When Steve was dying of cancer he couldn't even get the pain medication he needed. It depended on whether the health authority could afford to pay for it. So my husband Steve suffered severe pain and died. I got very angry with the nurse who was sitting with Steve. She didn't want to wake him up to give him an injection for pain. When she left. Steve told me he was in pain all night. I had to phone for a doctor. No one came out for 3hours. They were in clinic. Steve suffered severe pain. Steve died later that day. I am angry with the health services. They let us down. We are at their mercy if they have the money to treat us.
Don't beat yourself up for thinking you could have done better, or tried harder. I am sure you did your best and that is all any of us can do. Free yourself from the guilt.

Jul 24, 2012
Tina, Be gentle with yourself
by: Jillian

Dear Tina,
Firstly may I send my heartfelt condelences to you.

I too lost my darling mum recently (May 22nd 2012). We were extremely close. There are so many times I have gone over and over in my head how I could have improved her care and treatments. She never wanted a catheter, she never wanted to go into hospital (her prediction that she would pick up a hospital infection that would kill her came true). In the end my pleas that she should go to the local hospice were not heard until I contacted them myself and they agreed.

Tina, maybe at the time we both did the best we could given the shock we were in. I too felt like the medical professionals did not listen to what I thought was in mums best interests (even though I was next of kin) Strangers offer insensitive advice that it is for the best but I feel cheated that her care fell short of an acceptable standard that would have given her less pain and improved days.

I am trying to resume some kind of routine. I have a brother who is severally disabled and I am honouring my promise to mum that I would care for him.

My e mail address is jillianrcohen@hotmail.com if you want to keep in touch. What ever you decide I wish you strengh to get through this awful time. Jillian.

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