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Daughteranddad Asked April 2020

I cared for my father 1 year. He lived in my home with me, my husband, and my children. He had non small cell lung cancer. Any advice?

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...

GardenArtist Apr 2020
Mary Beth, sometimes people don't understand either the seriousness of the medical situation, or how to make life or death decisions based on someone's condition. I was in somewhat of a similar situation when my sister died of metastasized cancer, but it was more that I didn't realize how serious and advanced the metastasis was.

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.

MAYDAY Apr 2020
No reason to feel guilty.. Perhaps your brother does because he didn't spend as much time with dad when he had the time... Brother will be going through guilt. Perhaps he could have helped more, and couldn't or didn't.
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.

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Countrymouse Apr 2020
Hugs, Mary Beth.

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.

Daughterof1930 Apr 2020
After reading your story the word that comes to mind is SELFLESS. What a blessing you were to your dad to be so selfless to not persuade him to squeeze out every possible day. Days that would have been filled with pain and misery, side effects of treatments that to be effective at all are in humane and cruel. There are fates worse than death. Your dad was truly blessed to have you in his corner. I wish you peace

MAYDAY Apr 2020
Ok, so her is one of my stories: My friend's mom went to doctor visit. He said, " WE have to go in tomorrow and amputate your leg." No food or water after 9:00 pm. We are going into surgery in the AM. My firend and her mom said ok.
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...

MAYDAY Apr 2020
One person I met, didn't really know him then when my dad got liver cancer. He is in the medical field, and he is a good friend now, but I felt so terrible, thinking I would get assurance dad would get better. NOPE. He told me: Your Dad Is A Goner.. Short and straight to the point.... when cancer hits a major organ, especially the liver, it means it metastasized elsewhere, and basically in the blood which flows all around in the body... so cancer lands where it wants...

NYDaughterInLaw Apr 2020
"...I am really struggling- thinking that I interfered with God’s plan..." In my opinion, the oncologist interfered with God's plan, not you. You wanted to give your dad a good death. She, on the other hand, showed no empathy for her patient; it doesn't matter what she wanted. That she refused him hospice demonstrates a disturbing inability to see your dad as a person rather than a disease. You knew your dad better than any doctor ever could have.

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.

LoopyLoo Apr 2020
As already said, you did nothing wrong and you sure didn't kill your dad! Your brother is wrong here.

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.
Daughteranddad Jun 2020
Things have progressively gotten worse now with my step- brother. He no longer speaks to me. My dad left more of his assets to me than my step- brother, and he is angry. He says that he will no longer want a relationship with me or speak to me unless I split everything 50/50 with him. I decided to not respond. It really is crazy how money and death affect people and relationships. I am heart-broken now for multiple reasons... but the dysfunction is just too much.
lealonnie1 Apr 2020
Nobody 'interferes' with God's plans for how long we live here on Earth. Nobody. Not even you.

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.
Daughteranddad May 2020
I guess I feel guilty because the oncologist pulled me out in the hospital room and told me that she wanted my dad to do a one time brain radiation treatment at another hospital because of where the brain tumor was now located- it could cause blindness, seizures, etc. I asked her if he did it, how much more time it would give him... she said he would die sometime in the winter. ( it was October 29th/30th or so at this point). I asked her what if he did the additional 30 rounds of chemo she was offering.. she said he would still die sometime in the winter. I was worried bc I only had so much time off for work, and I wanted to be able to take care of him... I knew that if this went on for 5 months, I couldn’t take that much time off... also, of course I didn’t want to see my dad suffer through more treatments. SHE never had the conversation with my dad about his options- just me out in the hallway... she left me standing there saying that we would do palliative care ( but not hospice yet) and he could get the brain radiation.. of course when I walked back I , my dad asked me what she and I talked about- I think SHE thought my dad couldnt make good decisions with his calcium level high... but he was talking to me straight...at that point I told him that she said he would die at some point this winter- even with treatments.. and I BEGGED him to not do more and to come home with me and hospice. He agreed. When we had to get the hospital doctor to agree to hospice, that next day, his oncologist cane in- so rude.. and said to my dad “ who is your doctor, the one who orders your tests and knows what’s going on? And asked me why I called her office so many times the day before..( the hospital had called twice bc I was requesting hospice ). She then tried to talk to my dad and asked him “ if you have treatments, how long would you have?”- trying to show me that he couldn’t think straight.. he said “ not quite a year.” She took that as if he did t understand... she then came over to me and grabbed my shoulder- shaking g be with both of her hands- telling g me that I needed to give him a chance to fight. I was blown away that she approached me and touched me. I did file a complaint with the hospital, but nothing happened... she is a 60 + year old doctor there with only a few oncologists in this small town. She is known for being arrogant and bossy (and is also an atheist, which I think explains why she seems fighting for life at all costs to important). I guess my guilt comes from the fact that she told me that day that if he did nothing, he would pass much sooner. I had no idea it woykd mean 4 weeks later... so this is why I feel guilty. I don’t think my dad knew that it would mean he woykd due sooner- but I did. His only “ hope” was to make it u til Christmas, and I feel like I took that chance from him by persuading him to not do anymore treatment. I adored my father-outside if by husband, he was my best friend... but I wonder if I just became selfish those lady few weeks- tired of my life being upside down for a year.. not being able to hold my responsibilities together anymore as mom, wife, daughter, teacher... so I just wanted it to end. Does this change your response at all- or can you give me anymore insight about my guilt?
MargaretMcKen Apr 2020
I went through this, but my mother had an oncologist plus a physician (the over-arching specialist when there are lots of different medical problems). My mother had 10 mostly good years after breast cancer and a mastectomy, but she found the chemo and radiation very hard. Then it came back, and she had a major removal operation. When she was recovering, the oncologist wanted chemo and radiation again, the physician said it was not in her best interests, and they had a loud argument in the hospital corridor right outside her door. Mum chose not to go ahead after being told that her ‘extra time’ would be very little longer than the treatment time – and I had to push the physician for that information, as he clearly found it hard to disagree with the oncologist. We went home to our great GP, just to get out from under the specialists. She died a month later, at home like she wanted.

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.

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