My sister Diane was diagnosed with stage 4 lung cancer in mid october. She went to a local hospital for treatment and was recommended to try radiation to shrink the tumor to open up her airway so she could breathe a little better. She knew that she didn't have a lot of time left but wished to die at home and not in the hospital. As she followed the recommended options from the staff for her care her goal became to get home and into hospice there. We were told that would be nearly impossible as her breathing was quickly deteriorating. As each new episode caused anxiety, she began having a fib episodes also and they made the decision one night to intubate her. She only agreed to a seven day window and if no improvements were made she wanted to be taken off and let her go. After the days went by, we were all really stunned at the speed in which this all occured as she was actually showing improvement and was to be released to home care prior to intubation occured. We were all very shocked by this developement and the reasons given for the decisions being made. We all gathered to say goodbye to her. The doctors extubated her and we were told once again that she would pass very quickly without the tube. We proceeded to watch her struggle to breathe for the next 30 hours on her own, mind you vital fluids were cut off and her oxygen was reduced to 3 percent! We watched as she slowly became corpse like in front of us. We all knew she was very sick but after we were told she would not be able to make it home to pass because she wouldn't be able to breathe long enough to make it past the parking lot. To do so seemed like total bs as we watched her struggle the whole time on extremely reduced oxygen and no vital fluids going in. This all has been extremely hard and frustrating as we all felt as though she had a few good days left that could have been spent at home but were discouraged by them that it was too dangerous based on her lack of oxygen. As she lasted over 30 hours breathing almost on her own the whole time it feels like they ultimately decided she was too sick and sped up the process dramatically. Could she have been taken home? With fluids and oxygen may she have had a few good days to spend? Should our request have been denied? She was laughing, eating, and vibrant prior to intubation and was being told she could go home. Was her a fib enough to justify massive sedation followed by oxygen depravation, loss of medications for anxiety and blood pressure control and removal of vital fluids?I really can't seem to process or justify what happened to her other than it felt completely wrong. Has anyone else experienced something similiar to what I'm describing?
Told to me by those that lived it.
You may be feeling the shock of your loss right now. Feeling the anger also.
I hope in time, the good memories become more powerful. That you feel peace.
Lung cancer is brutal. I still have a 1966 special delivery letter from my grandmother to my mom in which she told my mother that she felt so good, she knew the cancer had been beaten. She was gone two days later.
Sometimes there's a rush of good before the final decline, so the fact that your sister was laughing and talking one day and intubated soon after is not indicative of any improvement in her condition. It was simply a good day, and that's something to cherish.
As an RN I am familiar with grief and grief counseling, and it often happens that we stay back before the loss of the love one asking "What if....." or "if only.....". There is a lot of "second guessing" our decisions and the decisions of other. Grief counselors say that we sometimes stay in "this place" because it allows a sort of magical thinking that something might have been different, could STILL be different if we go back in time and change one thing. It is hard to face the absolute of your sister being gone. Just like that, gone from you.
No one's grief is like anyone elses. I hope you will soon move from these last images but they are hard to move away from. For me, in the loss of my brother, it helped to write him letters, do a journal of them, collage it. Tell him my memories, my regrets, my second guesses, the rose I saw that day on my walk.
You may want to consider grief counseling group or work for yourself. A call to any hospice agency, whether they were used by you or not, can often direct you. Do know that for my own brother I fought for hospice, and I do mean, helped him to literally fight for it; and I was relieved when his suffering was finally over, for there was no upside coming. As I said, we all are different; not a one of us is the same. I thank goodness for Palliative care. I would choose it. It would be my mission were I an MD; it was fought for for a long time. And I thank goodness for Hospice and always will. I don't fear death whatsoever, but I do fear suffering, and I fear for family having to witness my own. I am sorry your Sister wasn't medicated enough to put her below a level of suffering, even were that to hasten her exit.
It is magical thinking for many of us to wish to go home to die. But it doesn't often turn out well there as well, without machines at bedside to suction secretions, without people constantly at bedside with medications.
There is no good way for us to lose someone. I hope for your healing. If you remain on Forum, or go back on Forum's many posts you will see more than a few who are not fans of Palliative care or Hospice, and you will see 100s who bless the day they came to us.
Know I know your suffering. My brother was Hansel to my Gretel in every dark wood. I carry him with me. There is often nothing to be done with grief but carry it. My heart goes out to you.
Death often feels wrong; like the timing is off somehow, and that maybe something else could have, or should have, been done to prolong life a bit more. We want to lash out and blame others, too. I know I felt an incredible amount of anger when my mother died in late February, although I couldn't direct it at anyone in particular b/c nobody did anything 'wrong'. Yet I still felt so ANGRY inside. It was mom's time to go, certainly, and I knew that in my heart, yet she took to her bed one day, w/o warning, and became semi-comatose, just like that. So I wasn't really able to say 'goodbye' to her while she was awake/coherent. I think that was part of why I was so angry; I wanted that chance to say goodbye to her on MY terms and didn't get it.
I'm so sorry you lost your sister under circumstances that weren't what she wanted. I pray that you come to accept this loss and find peace in your heart with the knowledge that your sister is no longer suffering and at perfect peace now herself.
Did she have an Advance Care Directive guiding the medical staff's decisions for when she became too incapacitated to do so herself? Human beings are all very unque and staff can only go by prior experiences with other like-patients. It's not a perfect science. I'm so sorry for your painful loss. May you receive peace in your heart.