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Is this guilt feeling normal.

mdnikki
Posts: 34
Joined: Apr 2010

Well its been nearly 2 weeks since my mom passed away. A little background the journey for us began when she went to the hospital with back pain in Feb 2010. After an xray they noticed an 8cm mass in her lung (probaby would have been detected earlier but mom rarely went to a dr). She had a CT scan and a biopsy.

We were set up with an oncologist at the hospital who told us this type of tumor is highly treatable and with chemo he should be able to shrink it so her breathing would improve. The chemo kept getting pushed back, they sent her to rehab on 3/31/10 to get stronger. At rehab she developed pneumonia and a UTI which caused hallucinations...this sent her back down the street to the hospital on 4/19/10.

Because my sister and I are the only ones to care for her, we couldn't be with her everyday in the hospital, we were there in the afternoon and evenings. Of course by that time we had missed rounds and it was rare that any dr would give us a call back to let us know how things were going.

Once the infections were cleared up she was able to get her first chemo treatment on 4/26. This was what we were supposed to do right...this is what our oncologist said would help her breath better relieve some of her pain. Maybe she wouldn't require so much oxygen..we were doing the right thing correct? Mom told us she would try the chemo to see if it helped her. She hated being in the hospital and hated all the prodding and poking etc but the oncologist said this would help.

Mom made it through the first round of chemo with what we thought were little to no side effects. We still were having communication issues with the dr's. I started researching other oncologists and primary dr's for her and found what I thought was a great resource cancer center that worked with the hospital but also had the social workers we needed in case we had to plan for in home or assisted living (up until this point my sister and I spent every workday either calling or visiting nurses and centers with no help from the hospital social worker).

So after so much frustration I called and set up a new oncologist and primary dr for her. She went to see my mom for the first time on 4/30. She was wonderful and called both my sister and I after her visit. However at this time my moms white cell count was extremely low, she began sleeping. They were pumping her with antibiotics.

Our new oncologist told us that even if she rebounded from the low WBC and was able to do another round of chemo she would only have a couple of months with this type and size of tumor. I know I am not blaming the first oncologist but if I knew this I don't know if I would have told mom to go through with the chemo in the first place. I would have done what she wanted which was to send her home and have a nurse there for her. She agreed to try the chemo for my sister and I because we both thought it would give her some more time with us..pretty selfish.

On 5/4/10 She began having trouble swallowing and had to have any meds crushed and her liquid had to be thickened so she would not choke..she stopped eating.

On Thursday 5/6 the oncologist told us we have to make a decision. Her oxygen level was 85 even with the oxygen mask. With moms low oxygen level they could not keep her on the oncology floor she would need to go to ICU so they can intervene and do more evasive treatment such as a breathing tube. At this point mom was not eating or drinking and was sleeping all the time. She would nod her head at times to acknowledge we were there but we had no more communication. We did know that she had a DNR and didn't want a breathing tube. We started to hear that rattle as she was breathing and as much as I told myself not to google it..I knew what it was. I knew what all her latest symptoms were.

The oncologist told us she had only 2-3 days left.

That night we did it...we told mom that we were moving to pallative care. My sister and I just cried by her bedside where mom mumbled I love you and pointed her finger at us to not cry. That was the last word I heard from her. She began morphene @9pm that night. My sister spent Thursday night and I spent Friday night. She never woke except as her morphene was wearing off she would be a bit compative and reach for her oxygen mask or kick her feet.

At one point in the night she went 6 hours between morphene injections (2 more hours than usual) and I just kept thinking..she's getting better hook up the anitibiotics again..but I knew I was fooling myself.

She passed away on Saturday..exactly 2 days after we began the morphene. Why do I feel this tremendous guilt that she spent over 3 months in the hospital and never got to come home. Why did I encourage her to try the chemo?

If you have made it this far in my story..thank you, I guess I just needed to get it out. While I am overcome with grief in losing my mom, my best friend. I am also dealing with this overwhelming guilt.

Thanks for listening.

Nicol

GregStahl
Posts: 188
Joined: Apr 2010

You made the decisions based on the information you had at the time and you did what you thought was best.
Its hard to lose a loved one. I lost my mom when I was 14 (1980) to BC and my dad in 02 and we made the decisions for them that we thought was best at the time.
If you keep feeling guilt, so see a proffessional and talk with them. I have on many occasions and it helps tremendously.
Good luck and I (we all are) here to help if you need.
Greg

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Nicol
Let me first express my sympathies to you and your family for the recent loss of your mom. I lost my dad on March 9th. It is very hard to deal with. It is hard to accept. But....we as daughters did the best we could for our parent. We did what the dr told us to do. You are suffering from the what if's right now. That will drive you absolutely crazy. What if your mom went to the dr much sooner? What if your mom went to the dr when the tumor was at stage I?
Things would have been different, but...she did not do that, so you have to accept the way things went. Mom went to the dr. when she wanted to. At that point, you and your sister did the best you could for her. Even if the 2nd opinion dr would have been the first dr, things would have been the same. The tumor was too large, it was too far gone at that point.

Try your best to not feel guilty. You and your sister were with her in her last moments. She knew how much you both loved her. That is most important. She is and my dad is now in a much better place. They are pain free, and no longer suffering. We will be with them again, and we will all spend eternity together. Jesus made us that promise, and you have to believe that. God bless you and your family at this difficult time. It does get easier. Peace be with you.
Keep in touch.
Tina

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Please remember that death from cancer is seldom pretty. Some people sleep their way through it, but not many. It probably would have gotten ugly at the end no matter what you did.

The first oncologist was following medical protocol, and like so many families, you got caught up in the medical machine. This is not your fault.

Our society treats death like it should never happen, when it fact it always happens. Death by cancer is nobody else's fault.

Like you a few months ago, I decide day to day how to be there for my terminally ill mother. It's impossible to do everything right. Doing the best you can is good enough.

grandmafay's picture
grandmafay
Posts: 1629
Joined: Aug 2009

I can tell you that guilt is a wasted emotion. I can tell you that you did the best you could. I can tell you that you should be angry at the cancer not yourself. All of those things are true, but they don't really help. They are just words. All of the things you are feeling right now are part of the grieving process. All of us question ourselves and our actions. The should of, could of, would ofs are very common. Each of us must grieve, and I know you are doing that. Try to concentrate on your good memories. Remember the love you and your sister shared with your mom. Cry when you need to do so in spite of your mom's words. She would have cried for you. I am sorry for your pain. Take care of yourself. You really did do the best you could have done at the time. Fay

Cindy Bear
Posts: 564
Joined: Jul 2009

HI Nicol. I am so sorry for your loss. I lost my mother last year to uterine cancer and I have a lot of grief and anger. I think it's very normal. My mother's cancer was very far advanced when it was caught. Stage IV. She probably had this a long time. She lived a very healthy lifestyle and was vigilant about going to the doctor. Sadly, all of her little symptoms (hindsight is 20/20) were written off as aged related (arthritis, age-related asthma) Her GP never sent her for any follow up. We tried to get her to go for a second opinion but she thought all doctors were the same and out of a misguided sense of loyalty I guess she didn't question him. I often beat myself up, why didn't we insist, why didn't we try harder. They offered chemo, she didn't want it but I guess she thought she'd be letting us down and they really portrayed it as a walk in the park kinda thing and told us "How far chemotherapy had come" what they didn't tell us was that any improvement with chemo would be short term and that it would only up her dismal stats by about 2-4%. They also told us her liver was fine (accord to scans) then after she passed, we found out her liver wasn't fine. Was this incompetence? Surely they wouldn't lie to us... or would they. If it had been up to me, I would have talked her out of it but she wasn't ready to die and everyone, sisters, cousins, friends all said the said, "oh that's good, that's treatment" At least we tried. Leave no stone unturned. Try to find some peace in that fact that if your mom hadn't tried the chemo, you would always be wondering what if... My BIL is terminal now. He has esophygeal cancer. He has been through very intense chemo and radiation. He told his wife, he doesn't regret any of those treatments. They bought his some time. Peace and Hugs, Cindy

anthonya
Posts: 11
Joined: Jun 2010

I too have experienced guilt related to the recent passing of my mother due to cancer (ovarian).

Know that our mom's would not want us to dwell on guilt in such a difficult time in our lives. It's important to realize that we did all we could given the circumstances, and that it is now our duty to continue the legacy that mom left us to live and honor.

If times get too tough, seek out counseling. No one should be allowed to live with guilt after the tragedy of the loss of a loved one.

It's time to rebuild.

It's time to heal and begin living your life the way your mother would have wanted you to live it!

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