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Sorry, more questions for those who've dealt with terminal illness of a loved one
At what point did they decide to stop treatment (did they want to try everything until the very end or at some point did they decide to stop and have quality of life over quantity)?
If they stopped before everything was tried, how did people react?
Dad's cancer isn't a curable type of cancer. I know that--we should all know that, as it's been told to us very plainly. Mom and I are the only ones who have been to dr. appt's, so maybe that's helped us understand and accept that, but of course we've shared this with everyone else. People seem to think Dad's just "giving up" if he decides to not seek further treatment. It makes perfect sense to me--he would be making himself miserably sick just to add on a couple of miserable months. Or he could stop treatment, and live life to the fullest until his body tells him to stop.
I just think people are selfish to expect him to do something that he doesn't want to do. He's not giving up--it's really not a winnable fight. I'm also the one that's around the most. Everyone else sees him very occasionally. I saw him in the hospital, I see him in the days after his treatments, I see him one a regular basis. It's not just the chemo affecting him any more, the cancer is, too. He's getting weaker. They don't see this.
If I hear the words "giving up" one more time, I'm going to scream. Dad has accepted his fate, and has an amazing attitude about it. I wish people would just look in his eyes and see that.
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Re: Sorry, more questions for those who've dealt with terminal illness of a loved one
My dad didn't want to do any treatments at all, and in the beginning he misunderstood and did believe he had a chance at being cured. I knew all along that he didn't because we'd just gone through the same thing with my MIL 6 months prior. So him not knowing that was key to him even starting treatment. He took it day by day / week by week to decide about going his treatments, but he did, and I am glad. He's maintained probably 90% of his quality of life, and probably would have been dead 2 years ago without any treatment.
Now, he's having to switch to a last line treatment that may affect his ability to be mobile and work with his hands - It can cause painful rashes and cracking on the hands and feet, and he's said a few times that if he can't get around on his own or use his hands to work on his old cars, he's done. That's what he enjoys, so to be in a situation where he has to be immobile or in a wheelchair and not able to use his hands would devastate him. He says if that happens, he's stopping treatments, and I understand that. It's his choice. I wish he'd continue because the twins are finally old enough to build some actual memories with him - hence this cruise we're going on in a couple of weeks - but I know that enjoying life is important.
In your case, I would feel the need to take the people who are saying he's giving up aside to let them know that their attitude wasn't appreciated and the decision wasn't theirs to make. It can't be beneficial to your dad to hear people second guessing his choices, and while you can't stop them from judging and thinking whatever they will think in their own grief, you have every right to ask that they keep it to themselves. Unless they've had his diagnosis and side effects, they cannot possibly understand.
Yeah, what people are failing to realize is that he probably doesn't have a year left. My sister keeps saying "well, you never know, he might outlive all of us." Um, no. He's not. I mean, I guess that COULD happen, but the doctor sure didn't think so the other day. He's not going to gain hardly any time with treatments, especially considering it was still growing like crazy with the treatments he's already had. The treatment won't have a significant effect on the time he has here on earth.
They have a very hard time realizing how awful he feels. I am not comparing HG to cancer or chemo, but I've shared this before on here, so I'll say it...I almost committed suicide when pregnant with Maile. I couldn't do it any more. I was so sick. Luckily Jon realized it, got me in the hospital with the drugs I needed to make me feel better, and I was able to realize what I'd miss out on. But I wasn't facing a battle that was impossible to win. I'm so glad I didn't end my life--and I'm also not comparing stopping treatment to suicide (in their minds, it is, and suicide is like the ultimate sin in their minds)....but I can on some level relate to why you wouldn't want to live like that.
FWIW, my mom wants him to do this current chemo treatment, but she has accepted what's going to happen and she will not push him to do treatment he's not willing to do (I think).
My Dad's was a totally different situation (already on a vent, couldn't tolerate any more chemo and cancer was taking over. He said he wanted off the vent).
I personally believe it's a much more honorable decision to not do treatment in this situation. He's sparing himself and you guys from the horrible effects of treatment for something that may buy him a few more miserable days/weeks/months.
I guess I don't have any good advice, just want to say sorry, I've been there and we're always here to listen.
My grandma had ovarian C. It was brutal and the worst 18 mos. She went through treatments that almost killed her. After 2 mos of a remission, it was back and spread everywhere. She decided that was enough.
I think when dealing with certain types where the survival rate is low/rare people need to just MYOB and let families decide.
I'm so sorry Erin. It's so hard. (((HUGS)))
FWIW, it's family that is saying this stuff...my sister, mainly, but other family members, too. It seems to be just me and my mom that has accepted what's happening.
Playing a little devil's advocate here (just trying to see their side), Are they saying it to your dad too? Or just to you and your mom? I would suspect that they are at a loss, not sure how to react, they want to fight the fight and they are just confused and not sure what to say, or whatever.
If they are saying it to your dad, I would try to nix that immediately...your dad doesn't need to hear that he should keep fighting or whatever. He just needs to be surrounded by people who support him and love him. And I would tell the culprits as much...that until they can accept your dad's decision, they need to stay away and refrain from making hurtful comments.
If they are just saying it to you and your mom, they are probably just trying to process the whole thing and aren't as far along as you and your mom are with the processing. NOT that its fair to you and your mom to hear that...its not....but situations that aren't everyday result often times in weird reactions and responses. I'd just keep reassuring them that the new fight is to die with dignity and without pain....its not the fight to "beat it" anymore...and he, in fact, hasn't "given up"....he's just moved to a different mission.
and
(((((((((((((((((((((hugs)))))))))))))))))))))))
This is exactly what I want for him. It's not giving up in my eyes. But I know I'm more open minded than they are. The reaction is not surprising to me. It is being said to him, though probably more often to me than anyone else. I think it's completely unfair to him, though. If he wants to fight, fine. If he doesn't, it doesn't make him any less of a fighter. I think he needs to make peace with all of this. I think it must be incredibly hard for him--he's crazy about his family and I know the thought of leaving all of us kills him--especially his grandkids. He lives for them. They're so busy making sure that he's fighting that they're not enjoying him.
Too many people lose loved ones suddenly. Those going through terminal illness are given this twisted gift--one that you can see the beauty in if you take the time. We're given the gift of having the chance to do what we want to do and need to do. We're given the chance to say our goodbyes, take advantage of the opportunities we have with them to live to the fullest. I can say that I think I've been having those moments with my dad for years. I've gone on trip after trip with him, even when it wasn't easy to travel alone with young children--but I wanted those memories for my kids. And now, I'm just going to make sure we do as much of that as we can with the time we have left. I wish people would let him have that gift, too.
Wow R, I love this. This is totally what the new mission is. Seriously just brought tears to my eyes.
I love you E! You already know how I feel!
I'm not a regular poster here, but both of my grandparents died of the same type of cancer, within 9 months of each other.
My grandpa went first. He tried chemo and everybody did the let's-be-positive, you'll-beat-this dance, even though the prognosis was grim. It didn't give him much extra time (he lived about two months after diagnosis, things went downhill quickly) and was terribly ill and hospitalized the whole time.
My grandmother saw how awful it was for him, and when she was diagnosed with the same cancer less than a year later, she decided against any treatment at all. She made her choice, was able to stay at home with minimal/hospice care until the end, with family around, and died within a month of diagnosis. She knew exactly what she was doing, and I think her death was gentler, if one can say that -- she just got weaker and weaker, instead of getting weaker but also having all of the horrible chemo side effects.
Fortunately, because our family members knew how hard the treatment was on my grandpa and didn't make a difference in his outcome, I think they understood better why she made the choice she did.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
E I am so so sorry about your dad. I have not had anyone close to me go through this but DandR said exactly what I was trying/about to. When it comes to facing a terminal illness its not about "giving up" or "beating it". It is taking the time you have left and trying to enjoy it the best you can. Going through treatments that make you feel worse and so sick is not the way to go.
HUGE ((hugs)) to you and your mom for being there to support your dad and understand his wishes.
I think I would have already slapped someone for saying "giving up" to me about anyone going through cancer. Seriously!! When someone has a heart attack no one says "oh, they didnt fight to live...just gave up"
E. Please dont let your family get to you. Be there for your dad. Come to us and vent all you need to.
Landon * Kaydance * Kennedy
5/13/05 ******5/24/06
* Baby is due July 24 2012 *
I'm so sorry to hear about your dad, Erin. My heart is breaking for you as I type this...
We went through this with my husband's grandfather last April. He was the true patriarch of the family, and his diagnosis was devastating. Within a month, he was taken to the doctor for a headache, tumor identified/biopsied, diagnosed with stage 4 glioblastoma, and passed away. After hearing the diagnosis, he chose NOT to do any treatments. This was hard for many family members to accept, especially since his brother had lived 6 years with treatment after being given 6 months to live. But what people didn't realize was that it was a different type of cancer. He wasn't giving up, or not trying, he was being realistic about his diagnosis.
Also, people grieve differently. Some people cry, some distance themselves, some eat, some get angry and blame whoever they can ("What do you mean, he is 'giving up'?!"). It's hard to respect the different ways people grieve, but it's also important to remember that there is no timeline, no 'right' way.
I think it takes a very strong person to decline treatment. It takes a person who loved their life, who has no regrets. My H's grandfather spent his last month surrounded by family and friends. They told stories of the 'good ol days' and he had the opportunities to say his good byes. I am tearing up remembering how emotional this time was for everyone, but he was present. He wasn't throwing up or in any pain (thanks to his meds). No regrets, his death was as beautiful and as peaceful as his life was, and oftentimes throughout that month I thought about how it was the right way to go.
Hospice was a great support for us as well. I apologize if you aren't there yet. I remember breaking down when I heard that word.. but their presence at the end was invaluable. When he was in the hospital, hospice often went to bat against the hospital staff who are trained to 'save' their patients to force them to respect his/our wishes.
I'll keep your family in my prayers during this very difficult time.
Thank you to everyone for your input. I know these feelings can be really hard to remember, and I greatly appreciate it.
REOM, people are often comparing it to their own experiences or someone they knew. There are some cancers that are typically more treatable. Rare cancers in general are hard, and then when you have something so aggressive and in a vital organ...
I'm trying to remember that people are grieving the way they need to. I'm trying to allow that, but of course it's hard to hear and witness at times. I think I feel protective of the situation in general, as I'm the one there, and I've been the one there long before his diagnosis. It's not that my siblings are absent from his life, or that he loves them less or they love him less than I do, but our relationship is just different. I've watching him live this, and they're around occasionally. They don't talk to my mom to know the intimate details, they don't go to doctors appointments and weren't there when we got the news. IDK...maybe it's the controlling aspect of me, but does that make any sense? I'm not saying what I'm feeling is right, either.
I'm not sure how long he has...from what I understand, he will go downhill fast when it really starts. Hospice isn't in our immediate vision, but I don't think it's too far away. Doctors have not been able to give him a time frame. We know that it's typically 6 months-2 years and they think he's had it about a year. That's all they can really tell us.
I do know he wants home hospice care, so I hope he can have that.
Hugs! With my situation with my uncle the doctor said it was too far along for him to treat. He did die with dignity and in peace. All his family and close friends had come to say goodbye. The last night night hospice said they would stay the night but he didn't make it through the evening.
Hugs, Erin! I feel for you so much and the last thing you need is more stress. FB me if you need me!
I was the selfish one with my mom and I regret so much, as you know.
Your sister will have to live with her own thoughts some day. You're doing what you need to do and that's all that matters. To him and you.
My Dad was in the hospital and rehab the last 6 months, never came home. He was often not with it b/c of being in the hospital so long and what was going on and all the drugs. He fought it until the end and I think he did it for all of us, especially my Mom, and never acknowledged in words that he knew he would not make it. My biggest regret is that I did not let him know it was ok if he did not want to fight anymore, I was scared to say it b/c I did not know if he realized what was really going on b/c he was usually out of it.
You are in a horrible position b/c you know he is making the best decision for himself, he wants his quality of life to be the best in can in the time he has left, and yet others are not likely to hear you if you say it.
I am so sorry you are going through this, it is very unfair but know that you are not alone.