She went into the hospital in Oct with a GI bleed and to our shock a scan found neuroendocrine cancer that had spread to her liver and bones - metastases from unknown source. My mom was 91 and a delight, She had been living independently in a senior community, with some support. I live a flight away, but due to my office going remote in the pandemic, I was able to live with her for a total of five months this year.(My sister lives locally but was less involved due to a new job and divorce; my brother lives in another state).
After my mom’s cancer diagnosis, I brought her home. She was now terribly weak, needing help with everything, and wanted PT to get stronger. We weren’t without hope. We had a tele-consult with an oncologist at a cancer center who specializes in neuroendocrine cancer, and he said that while mom wasn’t a candidate for chemo or surgery, he was seeing good results from immunotherapy. He was clear that this was a fast-acting cancer that could take her in two months, so we’d have to start treatment asap.
He still needed to evaluate her in person first. Before we could do that, however, my mom went back into the hospital with abdominal pain and lethargy.The ER doctor told me she now had pancreatitis, a UTI, plus high calcium.
They began treating her & two days later she started to rally. Her cognition returned and I was told her labwork was improving. The hospital’s on-call oncologist said he thought she’d be able to start immunotherapy within days, and she was happy. But later the next day, she started to rapidly deteriorate. Her abdomen distended; she moaned, strugglled to swallow and then slipped into encephalopathy, an alternated mental state. Nurses and a doctor told me it might be UTI, low blood sugar, or just the cancer.
Finally, the oncologist said he thought her high calcium, “hypercalcemia,” might be to blame and he prescribed an IV Bisphosphonates But it takes 24-48 hours to work. Meantime, my mom looked way worse and like she was suffering. The palliative doctor said she was actively dying, and my husband, who’d flown to be with me helped me see that as well. My sister and I began comfort care and she died that night - five days after being admitted to the ER.
As the main one beside her bed, I started to second-guess myself immediately. My brother said I should have insisted paramedic take her to a better hospital.
But my self-doubt really heightened when I read her medical records, and saw that an ER doctor had that first night said she’d benefit from the same calcium-lowering drug Bisphosphonate that the oncologist prescribed at the end. I read up on hypercalcemia, and learned it is a well known cancer complication that can cause symptoms that look to me just like what she had at the end -including near-coma.
I was upset the hospital had not seemed to put pieces together (I do realize that I don't know how they made decisions). I can't stop wondering if hypercalcemia was the big culprit that I did not catch. I looked back at my own notes, and a nurse at one point told me that my mom's calcium was going back into range. She said a separate number, the “ionized calcium” was still high but “that was to be expected with the progression of the disease,” I did not probe, maybe because it was part of an overall positive report when my mom was rallying. But had I done research then, I think I would have demanded they treat it.
I feel absolutely sick that I may have shortened my mom’s life, caused pain, and hurt her chances to have a shot at treatment. I keep mentally unwinding the clock and asking the right questions. My husband says she had a horrible cancer that we simply could not outrun, and that I’m beating myself up unfairly with speculation. I know on some level that is true. She was 91 with stage-four cancer. Yet, I can’t shake the image of her sudden decline at the end, and this awful feeling of self blame for realizing I didn’t do everything I could.
There was nothing you could have done differently. Your mom was 91 years old. No one lives forever. From what you're saying it sounds like she was a fortunate woman. A good family who loved her, still being of sound mind living happily and mostly independent in a senior community, and being in decent enough health for a very long time until the cancer. That's a life well lived. It's a blessing that she wasn't sick for years at a time or completely out of it for years from dementia. It would have made no difference if paramedics took her to a different hospital.
You were with your mom when she departed this life and went to the next and because her family was there, she went in peace. May God bless her and keep her.
Don't beat yourself up with guilt about doing more. Your mom was 91 years old and it was her time.
I heard on a long NPR program on grieving that second guessing and questioning ourselves and having feelings of guilt are a way to keep us from going through the grief process in that they keep us believing that something could have been done. That is almost always not the case, and certain not in this case.
Cancer treatments often prove as deadly as the cancer itself, and sometimes more quickly. But that said when asked if we wish treatment we make the best decision we are able and we have to live with that.
You have had to witness pain and trauma for someone you wanted to have peace and quietude. That is hard to see, and you are grieving. I know that you know that any of us is lucky to make it to our 90s.I know you understand that stage four cancer speaks of the inevitability of death. To my mind the most important thing then is the manner of death. You and family and your Mom made the best decisions you could with the guidance of MDs and with the facts you had. Now only time can heal your heart from things you saw; but your Mom is at peace, and it's no longer about her. If your hubby can listen I think his guidance is very good. If you need to hear this from a Licensed Social Worker trained in counseling of life transitions and passages, then do find that support as well, and trust in time, let yourself think it through but limit the hours of the day you will steep yourself in the same questions with no answers. That is, tell yourself that you will sit and think about this and nothing but this for 20 minutes. And then you will move on with the joy of living that your Mom would want for you.
I am so sorry this was so tough. Grieving is as individual as our own thumb prints. We all do it differently. I actually wrote to my brother the long letters we wrote one another any time we were no in one another's immediate vicinity. I decorated it and scrapbooked it and told him all the things I saw that made me think of him, and the things I wish I had done or not done, all the joys he taught me. It was a great help, and at about a year I just tucked it away.It had done its work to help heal my heart.
Grief is a different country. Give yourself time to learn the terrain. Be gentle with yourself. I wish you the very best. This is a hard loss, and at 80 I am starting to understand that those of us lucky enough to be able to last long learn it is quite a lot about loss in life, beautiful though the rewards are.
I wasn't involved obviously, but from what you said, your husband is right.
I have seen family overrun by cancer. All the love in the world cannot stop it.
I think somehow you have a small thought it could?
"But had I done research then, I think I would have demanded they treat it".
Learning to let go is a big task. Let go of 'research' (you are very medically informed but I am guessing not more educated than the specialists). Let go of what you think you may have done differently (it is past). Let go of wanting more treatment (it can become very burdensome, painful or futile).
Let go of the notion it was your job to save her.
Try building better connection to the good memories. Celebrate her LONG life. Remember her birthday & sing happy birthday. Acknowledge her absence at important festive occassions.
This overthinking 'rumination' probably has a purpose... Keeps you in place while you process grief. But it can rob you of your future - don't let it.
Death isn't pretty. She had stage 4 metastasized cancer, and didn't even know it until five days before she died. That was a gift, because she didn't suffer through months or years of treatment that made her feel horrible or diminished. She truly did live life to the fullest, and that's what you need to take away from this experience.
May God give you grieving mercies and wisdom during this difficult time.
Your husband should call your brother and tell him to apologize or stay away. Making you feel like you didn't do enough or the right thing is completely unacceptable and something a four year old boy would do, not a grown man.
I want to tell you that I think your mom was blessed beyond measure. She was diagnosed and dead within the same week. She got to live right up until she died. Wow! That is the best thing any cancer patient could hope for at 91 years old. Actually, any age.
I watched my sister die over 10 weeks. She had a body full of cancer too. 6 of her vertibrates had broken because her spine was so full of cancer that every move would cause a spontaneous break. She laid on her back and suffered away. She lost all of her dignity. It was very difficult to see and many times I prayed for her suffering to end.
My MIL spent 3.5 years battling cancer. It nearly destroyed her mom and her children. She didn't have one day of quality after her 1st treatment. I know that her family wanted her to beat the cancer, she was only 53 years old. Yet, she gave up all quality for quantity, that she probably would have had anyway.
Please listen to your wise husband. You didn't, don't and never will have the power over when someone dies, no matter what you do, don't do or think you should have done. When it is our time, we go.
My deepest condolences on your loss, dear woman. Sending you a hug and a prayer for peace that you can begin to see you had NO fault in your mother's passing. The cancer was at fault, and her advanced age.
I'm going to be charitable re: your brother's comment and say as another poster has.... he probably made that statement in the throes of shock and grief. However, if he starts to bring it up again, you need to tackle him and let him understand that those not present at the time of decisions need to be quiet. End of statement.
In time, you will be able to step back from your immediate grief and see that mom was a very, very sick woman. Any time a cancer has metastasized like that, the prognosis is not good.
And, to add, at 91, she was not a 'good' candidate for the treatments. Since she wanted to treat the cancer, they went ahead with planning for it. Had she chosen Hospice care, you would have seen the same outcome. In no way was this your fault. Essentially, the doctors were just putting out fires to keep her alive. At some point, they couldn't keep ahead of the illness.
BTW--chemo is horrible, horrible to live through and adding radiation to that--she would have been so miserable. She had a good life and obviously a lot of love. Don't spend another minute dwelling on the 'coulda been'--mom lived a good life and died without undue suffering. A lot of people don't get that 'blessing'.
((Hugs))
See All Answers