He underwent 30 days of radiation and 6 weeks of chemo, 2 months of immunotherapy, then had his lungs full of almost 3 liters of fluid and had to have a pulmonologist drain them... twice. He was in the hospital the last time in October. Scans showed the original tumor (10 cm) was now larger, there we now a tumor in his other lung ( same size), and now a tumor in the brain. The oncologist talked to me, told me she wanted him to have brain radiation for a one tube treatment and then he could do 30 more days of radiation and another 6 weeks of chemo if he wanted to be “ aggressive.” I asked her how long he would live if he did all this... she said he would still die sometime this winter. She said we could have “ palliative” to talk to him but not hospice yet. I disagreed. I went in and talked to my dad and begged him not to do anymore treatments... and his early, I was tired and didn’t want to do anymore. He agreed with me and asked for Hospice. We had to go above his oncologist to get hospice because she wanted him to fight. My dad came home with me and lived 4 weeks with me and hospice taking care of him. He wanted so much to live until Christmas... and he didn’t. He died November 27th. My brother blames me for my dad not making it until Christmas... and I feel horribly guilty- like I killed my dad. I feel guilty bc part of my reason for not wanting him to continue through more treatments was that YES... I was tired- I took him to all treatments except one.. it was hard balancing working and taking care of my children and my dad- and I dreaded more and more treatments for God only knows what kind of quality of life for Him. My dad was 71 years old... as a Christian, I am really struggling- thinking that I interfered with God’s plan and even if my dad had wanted to do more treatments... I feel like He agreed with me bc He trusted me- and I feel like a horrible person- selfish and guilty. I talked to my dad’s primary doctor- he told me if it were his father, he would have done the same thing... my aunt talked with me about my uncle taking treatments until the end- how he wasted away into nothing... and for what? I guess I am looking for any advice in finding peace. I own my selfishness in wanting it all over with after a year...but I’m not sure if maybe I just am a horrible person and my brother is right. Thank you for any insight or help...
Your brother is being a jerk. You can’t change that. Live your best life for your father and your family and for you Mary Beth. You have been through a horrendous ordeal and it will take awhile to recover. Keep busy and know that this time will pass.
It might help you to read “Being Mortal; Medicine and What Matters in the End” by Dr Atul Gawande. I know it really helped me. Sorry about your brother.
Avoiding burdensome & painful treatments IS an available choice.
She also had compromised lungs, and a tumor that had spread to her brain. Obviously, I can't speak for everyone and how metastasis to the brain affects others, but it was horrible for my sister. She developed drop foot, could hardly walk, had a pleural effusion, went into respiratory failure 6 months before she died, was intubated but after a few days pulled out the tube herself, and eventually became too weak to even stand.
It was agony for my father and I to see her suffer as she still fought to live. When she developed pneumonia, one of her treating doctors said there was no way to fight or cure it b/c her lungs were so compromised.
I would never, ever want anyone to experience something like that. Your strength in making the decision for hospice saved you, your brother and most importantly your father from further discomfort, pain, mental agony and more.
Your brother either doesn't understand or can't accept reality. Since your father had been given a terminal diagnosis, and given the already advanced stage, keeping him alive to linger w/o quality of life would have been cruel.
You made the right decision. Hopefully your brother will come to realize that, but if he doesn't, know that you spared your father from the ravages of metastasized cancer.
A friend told me something I remembered throughout my sister's last ordeal: he made the best decision for his father at the most critical time of his life. I feel the same way. I hope you can reach the point that you do too.
It's only five months since you lost your Dad. And in the run up to that, months of torment for him until you and he discussed what to do and he - HE - decided to cease treatment.
The reason to forgive your brother is that he is in pain too, and blaming someone eases it. So give him time, and be prepared to go over the options again when he wants to talk, as long as you want to talk it through too.
The oncologist, at first sight, it is a little harder to forgive. I'll be charitable and assume that she was advocating the aggressive option - which after all is her specialty - knowing that your father had equal access to all of the alternative information. As indeed he did.
Lionel Shriver wrote a whole novel about this subject, called "So Much For That." I don't recommend the book for you at the moment - Ms Shriver is too good at dissecting painful emotions, which makes her a challenging read - but there is one scene from it that really fits. The patient's husband is reviewing his wife's treatment with her oncologist and asks what it has all been for. The oncologist thinks, reckons and says "we bought her a good six months." The husband says: "No, doctor. It was not a good six months."
Your father made his own decision. The fact that HIS decision also shortened your suffering, as well as his own, does not make you guilty of anything.
You are in pain because you loved your father and not because you have done anything wrong. All you can do is give it time; and meanwhile I'd recommend you pray a little more, if anything, only please don't forget to listen to your loving, all-understanding and endlessly forgiving God.
Morning came, and mom was hungry..Please I just need something. so friend gave her a piece of dried toast. They go to hospital. First thing doctor asked: Ok, are we ready? No food or water since last night, right? No... we had a piece of dried toast... Doctor called off the operation until the next day. That night mom, died.... She didn't wake up in the morning. I told my friend.. Her dad took mom home finally.. her dad died years ago. I said it was a blessing.
QUALITY OF LIFE IS BETTER THAN QUANTITY OF LIFE. Living until a certain date, because of what reason? It's just time, and nothing else. You celebrate your loved ones who pass with a salute, a prayer... but trying to get them to hold on for a month, with a body that is quitting, so not right.
The poor doctor wasn't going to get the extra cash for that treatment that wasn't going to cure his condition, it was just going to delay the timeline.
If your brother thinks that these treatments are just so much fun and painfree, then he really hasn't been in the room for that or caring for him afterwards. Chemo.. kills all cells, and hoepfully the good ones come back faster than the bad ones...
Chemo, Radiation, and other manmade things that you and dad decided not to endure any longer is okay. It's not fun, and it hurts... My friend had throat cancer, chemo then radiation. She could hardly speak... She asked if I knew how it felt to be burned from the outside in.. into her throat...
Once your dad's cancer spread, it was most likely all over in the blood stream. There was no way to cure him, and holding on for one more day... God did take his child home. This was the right decision. DO NOT FEEL GUILTY. GOD TOOK HIM HOME.. :)
It is okay. Do you feel your dad around you? My dad was not a believer in GOD. We would walk, and he'd ask why I believe. I just do Dad.. I just do. When he died, he showed my signs so many ways... I do too. I am now a believer... :) He was around me a lot... One dream, he told me, I am here,, So many signs from him... I love you Dad!!
When my FIL passed, he told MIL, I am too tired. I don't want to do this anymore.. I am so sorry I have to leave you... :( This is not my body any more...
I am slowly getting over it. I now find myself more protective of my immediate family since they were so much on the back burner during all of my mother's issues.
I just need to start letting go, and learning to be honestly happy again.. That is a hard one for me.. I am trying.
covid... getting to know my family a bit more.
You did not kill your dad.. Trust everyone who has responded. Don't go down that road, you didn't do anything wrong. Everyone goes.. we just don't know when... That is up to God.
You did right by your dad! You are entitled to grieving and finding peace. You owe *nobody* an explanation about the intensely personal relationship you had with your father. You can hold your head up high that you helped your dad accept death and die with dignity. That takes courage, compassion and love.
You probably knew your dad better than your brother. Your brother is going to have to live with his choices. You do not owe your brother to be his punching bag. Next time your brother says something hurtful to you, end the conversation straightaway e.g. "I'm hanging up now" is perfectly acceptable. If he calls back, let it go to voicemail.
Be gentle with yourself. Take care of yourself. Meditate. Read scripture. Sing. Cry. Laugh. Enjoy your family.
May your dad's memory be a blessing to you. Peace.
I have had 2 family members go thru chemo, one lung cancer the other breast cancer. My sister had 8 months of chemo. One week out of every 3 weeks she was sick. When she had a mastectomy they got everything but...wanted to do aggressive therapy for that one little cancer cell. Her screenings showed she was cancer free. She only lived 4 months after her last treatment. Would she have had more time if she didn't have the chemo? It weakens the immune system. My Aunt had lung cancer, same thing, would she have lived longer if she had a second bout of chemo?
I friend had an oncologist who threatened her. Friend has a lumpectomy and refused radiation and the 5 yr pill because of side effects. When the oncologist heard this, she said she would have never done the surgery if she knew friend wasn't going to follow thru with treatments. What happened to people making their own decisions.
My big question out of this is where was your brother when you were going through all this with your dad?
It may take time, but eventually you will see you did the right thing.
Your dad made the best choice possible and you helped him as his advocate.
Of course you wanted to see his suffering come to an end, that is what people that love feel when they see suffering.
I am sorry that your brother thinks that you did anything wrong. It sounds like he kept thinking that he had more time to spend with dad instead of taking the time when he had it. My brother is the same way, everything is always someone else's doing. Never taking responsibility for their own actions justifies their bad behavior towards others.
Please do not buy into the lies. You did nothing wrong. God decided that it was time and that he was ready to leave this pest hole for his heavenly home.
Focus on the facts that your daddy is no longer suffering, he has no sorrow, no sadness and no more tears. He is with loved ones that have gone on before.
You are not your brothers garbage dump, tell him that you have to go when he starts blaming you, hang up, walk away and throw away the lies he is spewing.
May GOD give you grieving mercies and strength during this difficult time. Give it all to Jesus.
I have been there, done that, got the T shirt. You TOTALLY did the right thing! You are an AWESOME daughter. I cry for you now, because I know how hard you tried and the sacrifices you endured. Please know that you followed God's plan to a T! My own father passed away from the same lung cancer. In the end, he was cancer free. It was the treatment that killed him. Quality over quantity always! He was so miserable, those last few months. He passed away in November of 2004. I miss him everyday. Yes, I am a daddy's girl. Even when he was at his weakest, he always managed to tell me that he loved me. He would point to his eye, then his heart and finally at me. He could say so much, without saying a word....
Situations when a loved one is dying will cloud thinking. My mother let her father languish on a ventilator for weeks, saying "But he wants to live!". Thing was, "But he wants to live!" really meant "But I want him to live!". And of course we all did, but everything about him was already gone. Keeping him on the ventilator was keeping him from God at that point.
Your brother is angry his father is gone, angry that he got cancer, angry he couldn't be saved. And when we're angry, we want to blame someone. We're mad at people and sometimes God. In reality there's no one to blame here, but as humans we want resolution somehow.
You did not kill your father; lung cancer and a brain tumor killed your dad.
An oncologist not wanting to write a hospice order because she wanted her patient 'to fight' is not a medically sound or compassionate thing to do. Ultimately, it is the PATIENT'S decision on how to proceed with his care; not the doctor's. I think you know that; so now it's time to believe it.
Getting him on hospice helped him to maintain comfort and dignity during the last days of his life. Instead, your brother wanted him 'kept alive' at ANY costs, for a few more months, so he could have a less 'guilty conscience'? How does THAT make sense? To encourage a person to suffer tremendously in an effort to live a few more months??? Your brother is the one with a skewed vision here, not you, my friend. That is a fear driven response to an eventuality all humans face: death. None of us can avoid it. What we CAN avoid, however, is tremendous suffering along the way.
Yes you were tired. But more importantly, your father was tired. He was running on a treadmill, with no chance of extending his life for any real length of time, and getting nowhere. The only thing he'd be guaranteed with more chemo & radiation was a few more months of agony. And that's the truth
My cousin was diagnosed with stage 4 brain cancer at the age of 40; with 5 young children to care for. After having a brutal brain surgery at first, and then undergoing a year of daily chemo (in pill form), he swore he was DONE trying to extend his life in any way, shape or form. Because the treatments were making his remaining time on earth SUCH a torture, it was unbearable and he couldn't take it. So he's stuck to his guns, some 4 years later, and hasn't taken anymore 'cures' from doctors who just keep wanting to try various forms of poison to put into his body. He's accepted that he will pass when God is ready for him, and that's his decision to make.
You did the right thing with your dad but you are allowing guilt and the 'would've been's/should've been's/could've been's to eat you up. Your dear dad was fighting a losing battle with with a deadly disease and God was ready to take him home when He did.
He's at perfect peace now and enjoying this leg of his eternal journey. He'd like YOU to be at peace with the decisions you helped him make at the end of his life on Earth. You are not a 'horrible person' and your brother is wrong, not you.
Wishing you all the best in accepting your dad's passing and not blaming yourself for it. Sending you a hug, a prayer for peace, and my deepest condolences over the loss of your father.
I still wonder if the oncologist really couldn’t accept that death was inevitable, or just wanted the money. I’m sorry to say I think it was the money. At least my own sisters were better than your brother. It’s hard enough to grieve, without dealing with stupidity as well. I hope that you can cope OK.
You had a very traumatic experience with an unhelpful, rude and abusive doctor. It seems to me that your guilt is centered around her "promises" of how much time your dad might have had with this or that treatment.
There are no guarantees in oncology. Docs take their best guesses based on clinical data and experience; and very often, they are wrong. The patient dies sooner, or much later than predicted.
It seems to me that you are confusing the fact that you were worn out by caregiving with WANTING your father to die, when in fact nothing could be further from the truth.
The lack of a supportive medical team and the fact that your father passed perhaps a week or two earlier than the doctor predicted are clouding you from the knowledge that you did your best to get your dad the kind of care HE wanted.
Oh, and your step-brother? He sounds like a first class jerk.
Given the traumatic way that your mom dried and your brother's abandonment of you at that critical time, this death may be reopening old wounds. Please think about using hospice grief counseling to talk this through with someone. (((((Hugs)))))))
DandDad, are you serious? This is literally what happened?
It was just over six months ago. Revisit that complaint, and this time copy it to the oncologist's professional bodies. I don't care if she's the only oncologist left on the planet, there are codes of conduct she is professionally obliged to follow and she cannot be allowed to behave like this.
hoi g through that on top of everything else was just too much.
Thank you so much for making an update that put this thread to the front. I missed it when you first started it back in April.
I just had a conversation with my oldest brother along the same lines, “Did I influence Dad to refuse a feeding tube for my own selfish desires or for his?” My brother didn’t really comment on that question (and I’m glad he didn’t because he was the least involved with his care).
There is a theory of grief called the Kübler-Ross model which believes that there are five stages of grief: denial, anger, bargaining, depression, and acceptance. Any of these stages may be skipped or recycled with the ultimate healing stage of acceptance. I think guilt is a normal feeling when we deal with the exhausting, monumental task of taking care of a person with multiple disabilities or one who is dying.
As a fellow Christian, I understand your feelings completely. We spend a lifetime learning how to distinguish the gentle reproof of the Holy Spirit with the condemning voice of the Accuser. Your self-questioning was prime fodder for that vicious oncologist and self-serving brother. Has it occurred to you that your brother may be using a manipulative tactic to get you to give him more money? Make her feel guilty and I get what I want. Done consciously or unconsciously, it would serve his purpose.
I believe you are in a bargaining stage in which you believe that your actions were responsible for shortening your father’s life, yet your personal care for a year most certainly prolonged it. My father died in October, and I have been in the bargaining stage many times. It seems some random conversation or situation with someone else’s parents will throw me back into questioning myself - as if I alone had the power to change the outcome - at the time I had four siblings and numerous doctors and nurses giving input. One thing I do regret and will learn from is not getting my father on Hospice sooner. I had brought it up two and a half months before he died and was roundly shut down by my family and nursing home staff. As it was, when I finally demanded it, he lived only two weeks longer with this extra layer of care.
I want to thank all the people who responded to your original post and to you for writing it. This thread has been a comfort to me, as I needed to hear their words. Please realize that you will go through many stages in coming to live with your father’s loss. Self-recrimination or bargaining is just one of them. Could I have done better in caring for my father? Yes, and for that I acknowledge and ask forgiveness. Did I do many things right? Oh, yes, indeed! With God’s grace and power I did, and I give God the glory.
Give yourself time to come to peace with this, though I do agree that the doctor needs to be held accountable for this abusive and unprofessional behavior. Read your Bible, pray, take good care of yourself, your husband, and family. I will be praying for you.....and would welcome your prayers as well.
Stick to your guns. Dad wanted you to have a bigger share for a reason. Did u do most of the caring?
Yes. My dad moved in with me ( and my husband, and our 13 year old daughter and 7 year old son). He loves with us from December 2018- when he passed November 2019. My brother took my dad to one chemotherapy treatment. He does live 2.5 hours away. Since my mom died ( our shared parent) about 20 years ago, he visits us only at Christmas with a phone call maybe once every few months. Now, of course, he is not speaking to me.
I’m torn trying to decide if I should still send my niece and nephew birthday cards and gifts since my brother and his wife want nothing to do with me and my family. My gut says not to send anything, because I fear retaliation and threats from my brother.
As a Christian, I want to do the right thing, but I honestly think doing nothing and just letting a things be may be the best thing to do.