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.
In my opinion, oncs don't like to deal with death. They are trained to provide "curative" treatments at every turn if they believe the patient MAY survive. They MAY survive, but in MIL's case, she could come home permanently in a wheelchair or worse yet with dementia symptoms due to her hx of Parkinson's and MS.
This is an aggressive cancer she has, but since October, there has been no treatment. She looks and sounds 100 percent better just from not having it, and the consultations will be going into late February as to whether she wants to have it. NO ONE can give her definitive answers as to quality of life questions, because the sample size is too small.
In your case, your mom wouldn't have qualified until she was medically stable. Which she wasn't. Her age was also a factor. And had she had this, it might have shortened her life too, or made it that much more painful to live.
Be at peace, daughter. You did nothing wrong. I bet your mom is blessing you from the other side.
I can I identify with every single part of your post except the specifics of your precious mother's passing. First, I am so sorry for your loss. Secondly, I suffer the same set of thoughts and doubts that you do. Thirdly, I can tell you that you did everything right and cannot live with the "shoulda, woulda, coulda's". They will kill you. My dad passed September 2 of this year, and he was 98 years old and my little buddy. But that wasn't old enough for me. He passed at home quickly, unexpectedly, early in the morning, with me. Yet, I beat myself up daily just like you do trying to rationalize that it was my fault and if I had done something different, he would be here today. Even though I have all of this guilt, I can tell you that that thinking is wrong on many levels, and it goes nowhere except to threaten your own sanity and future. Stop. It's not easy, and I haven't found it getting any less difficult. However, I have sought counseling and I attend Griefshare, both which have helped tremendously. When you talk with others, you'll find that many people who have lost loved ones feel the same way we do, but that doesn't mean it's the right frame of mind. Be content in knowing that God knows when you will be born and when you will die. As humans, we have no control over either event, even though we'd like to think we do. Rest assured that, in our weakest moments, Satan finds a way to make us doubt. It's all part of it. So be strong, and listen to others on here as well when they tell you that you did a fantastic job and need to rest in your own peace as well for being such a great daughter. Much love. God bless.
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.
For most of us, even the few if us who are medical professionals, sorting out the highs and low of electrolyes (sodium, potassium and calcium, among others) is a real connundrum.
My mom was in a GOOD hospital once upon a tine, in the neuro unit--they thought she'd had a stroke, but the CT was clear--and her sodium was very high.
One doc walked in with several bottles of water and said "drink these". He left.
10 minutes later, another doctor walked in and said "why the He》》 are you drinking all this water? You need to be on a no sodium diet".
He also left.
I guess my point is that if docs don't always know for sure how to figure this stuff out, then how should I (or you) hold myself reaponsible for a parent's illness or demise?
I would suggest, gently, that if you can't let these intrusive thoughts and the guilt go, you might find yourself a grief counselor or therapist to talk to. I find it very useful.
I'm so glad that you got to be with her in her final months. What a true gift that was for sure. Your mom would not have wanted you to see her continue suffering for months on end while the cancer ravaged her body, so please rest in the peace that the Good Lord took her home in a timely manner, where she is now pain free, and running the streets of gold. It doesn't get any better than that!
I pray that God will give you His comfort and peace in the days, weeks and months ahead.
I totally "get it". I was just like you for many months after my Mom died. I was in such denial and had gotten her so many tragedies and traumas, I just "assumed" her last illness ( autoimmune hepatitis causing liver failure) would be beaten just like her salivary cancer, CHF, osteoporosis, stroke, heart attack, etc. I was "sure" if I had just done this differently, or make that decision instead, or researched more, or went to another doctor...I could "SAVED" her. After many months of painful grief suffering, this forum convinced me I needed super support...and I started one-on-one grief counseling with a counselor I adore...and attended GriefShare at my local Church as well. I used ALL the resources around me including my husband ( who was a savior through my pain) as well as my friends.to pour out my guilt, my regret, my agony, anger and sorrow. I learned a few things this past year and a half; 1. Grief take a LONG time ...you can rush it and you have to go THROUGH it...all the tears, the pain, the ripping apart, the guilt and regret...eventually it loses its grip ever so slightly day by day and you find more reasons to be with the living that to stay in the past. You never forget, but you start to laugh a little, smile again ...remember some of the fun, silly, happy times with your Mom instead of just "the end" time. I was with both my parents their last 2 weeks 24/7 before they died...and the suffering an pain was hard to get past - but as Alva Deer here taught me -- it eventually comes down to a DECISION you MAKE and work out DAILY ...to move FORWARD PURPOSELY or keep sliding back to the pain in the past because in some ways it is more comfortable, even though certainly no "better" by any means.
Try to limit yourself to the time you actively re-think everything. I started by settling a special place in my bedroom - for 1 hour a day I went there and thought every horrible "what if" in my head. I cried, yelled, sobbed, and got it all out. Then I would discipline myself to STOP...and go concentrate on my husband, my pup, my work, my grown son and his family, my friends. The next day I did the same thing...over and over until I reduced the hour to 45 minutes, then 30 minutes, then 15 ...then 3x a week, 2x a week and now...just when needed ( 1-2 times a month or special occasions when it really hurts). I survived with counseling, friends, some minor anti-depressant medication ( which I no longer need per the doctor) and time...you have to make the conscious decision to get better, to turn the corner and concentrate on the the people and things you have now that you love and who love you. I promise it is worth it. I promise you get better. Remember you only grieve because you loved...so even though it is a painful process, it is a wonderful gift...to be able to love that much to grieve that much. God wrap you in HIS arms and comfort your heart and mind. Write me anytime you need an ear or a rest - been where you are - I can help you get to the other side where the wound starts to scab. xxxoooo , Laurabelle
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 dear brother died a the age of 66 of colon cancer. He choose to have chemo therapy and lasted eight months and died. I respected his wishes but to see him skin and bones was not a pleasant site to see, It was difficult for my family and very stressful. I loved my brother but was relieved when he passed peacefully with his family. I encouraged him to have a colonoscopy but he declined and at the end before he died he told he wished he listened to me. In my opinion it was his time for God to take him home but if it was not colon cancer it could have been something else. Wishing you peace in your heart. Find comfort knowing your mother is finally at peace and without pain. My belief is you will see her again in a better peaceful world. Hang on to that. This is what I do when I feel sad for my dad and brother. I take care of my 99 year old mother and I am certain when the Lord takes her home I will be very sad but will be relieved she will no longer suffer. Ignore family members that are critical of you and be at peace with yourself and know you did the best you could as I am doing the best I can taking care of m y mom. there are lots of emotions going on right now with all of you concerning your mother. Take a day at a time, take care of you and don't do too much thinking and this will all pass and one day you will feel better knowing you were there for your mom. She was fortunate to have a wonderful caring daughter like yourself.
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.
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.
I am so sorry for your loss. You didn't do anything to hurt your mother. You might want to read Atul Gawande's "Being Mortal'.
Please keep in mind that a workup by each speciality, including the ED provider, will list the ongoing deviations from 'norms' as well as potential treatments. That doesn't mean that everything listed is a problem that needs to be addressed immediately. You will see a laundry list of several things, but perhaps only a few may be driving the current hospitlization. (Keep in mind that elevated calcium levels could be expected with bone metastasis.) A patient's progress through the hospital might look like: ED-> Internal Medicine/Hospitalist -> Specialist (Oncologist/Critical Care/Cardiology, etc). Ultimately there will be one provider making the care decisions with daily input from the other providers that have been consulted. I think this was the oncologist in your mom's case? The primary provider will determine the best course of action. In this case you note that your mother was actually fairly comfortable even with her elevated calcium, and had started to rally. Her lab levels were normalizing. In that case, in a frail, terminally ill 91 year old with stage 4 cancer, a history of a recent GI bleed, pancreatitis, and an infection, the best option might not be to risk hypocalcemia by treating the hypercalcemia, but rather more consevative treatment. With her liver affected, her ability to process drugs would be reduced and there can be difficulty with adjusting dosing because of this. Once your mother became symptomatic it was treated, but your mother had major comorbidities (liver mets/pancreas) which cause the same symptoms. Since your mother was actually rallying initially even with the elevated calcium levels, perhaps the cause would be the combination of all her other serious illnesses?
Stop second guessing yourself. Your brother shouldn't backseat drive your decisions. You did the right thing. Keep in mind that right now hospitals are juggling beds, and another hospital would be unlikely to accept a patient as ill as your mother was when she was already under care unless there was some extraordinary service they could offer that most places could not.
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.
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))
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.
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 can’t believe your brother made the comment he did but people can say idiotic things in their grief.
Blessings to you on the loss of your beloved mom.