To anyone who thinks I haven't done right by my father

tigrita

I just wrote a letter, not to send, just to get things off my chest. It is to members of my family, and to the unreasonable guilt in my own heart, regarding my father's choice to refuse treatment and tests for his cancer and potential other conditions. He is a stubborn, angry, bitter man and has not been a positive influence on me or my family at any time that I can remember, but despite this we all still want what is best for him and want him to do what is necessary to recover or at least have tests that give information as to what to expect for his prognosis. Anyone who takes this pro-medical position becomes an enemy to him and he just shuts them out or becomes hostile. I seem to be the person in the family he is least hostile to in general, so everyone turns to me to make him see reason, encouraging me to manipulate him, scare him, argue with him, whatever it takes to convince him to talk to the doctors and get tests and treatment. After trying some of these strategies, which do not feel right to me for many reasons, most pertinent being *they don't work*, this is my response to them. I don't feel it is necessary to actually send this, it is more for my own resolve, but I may send it if they become more pushy or judgemental at some point.

To anyone who thinks I haven't done right by my father:

Everyone seems to think that I have some magical connection with my dad, that he'll listen to me, that if anyone can make him see reason, it is me. *If anyone*. Well, *no one* can. I've given my father logical arguments, scientific arguments, emotional arguments, and common sense arguments, none of which have any effect on his position regarding treatment, tests, doctor appointments, or recovery strategy. Even regarding the Hulda Clark "liver flukes cause all cancer" theory, he persists with her "bug zapper" plan and detox diet after I showed him evidence of her fraud and unfounded claims, with scientific evidence to refute them. He will see things as he chooses to and there isn't a damn thing anyone can do to change that. It is futile at best, destructive to him and those arguing with him at worst.

The only choices I have are to continue to argue with him, filling his last months with even more angst, letting him feel more disillusioned, abandoned, afraid, and hopeless, as well as endangering my own emotional health and even my inheritance (selfish, I know, but valid.), and having it not change the physical outcome of his situation; I can ignore it all, giving no opinion or support one way or the other, asking no questions about his health, effectively extricating myself from his condition and life emotionally; or I can support him in what he chooses, hearing non-judgmentally and with no agenda what he chooses to share regarding his own strategy and developments in his health he may share if he feels safe in doing so, at least making his last months that much easier for both him and me. I am choosing the later.

I've made sure he's getting all essential nutrients in his nutritional plan, which he is, and I've pointed him to some resources and online forums for balanced vegitarian and anti-cancer nutrition that are more medically accepted. That is the best compromise I can make, and the best way to get him some support and people he may trust to talk to. Maybe as he trusts my support in the direction he has chosen he will accept other medical advice from me or steps in that direction, and maybe he won't.

I could waste my life and his hoping to find the magical strategy that will make reason dawn on him. This magical strategy does not exist. The power of his denial and delusion is more powerful than any reasoned or emotional argument I could ever make. If this denial and delusion brings him more comfort than anything else, that is his prerogative, and I will not make his and my life more difficult by fighting it. It is undoubtedly true that his choice is shortening his life dramatically, and the end will not be pretty. My choice doesn't change this. What it does change, for the better, is the quality of his life and mine in the interim.

~ Tigrita

grandmafay

Hang In There
I can, to some extent, understand where you are coming from. Several months before his death, my dad was scheduled for exploratory surgery. He had been having digestive problems for some time, and it was determined that he had a blockage of some kind. A few days before the surgery, my dad canceled it. Needless to say, my sister, mother, and I were upset. After trying to talk to him, I came to the conclusion that this was his choice. He had become an angry and unhappy man as he aged. He was legally blind and had had to give up driving. He resented not being able to do the things he had once done and even threatened suicide. A few months later, he died of a heart attack while raking pine needles. Who knows if the surgery would have found anything that would have changed anything. My father was a positive influence in my life, but he was often difficult. As he aged he became more and more difficult. I can imagine that a man who was difficult all the time just becomes more so as he ages and deals with health issues. You can't change him. You can only deal with him as best you can. It sounds like you are doing that. Hang in there and take care of yourself. Fay

SamsWife

To Anyone Who Thinks . . .
Hi Tigrita,

In a nutshell, it is your father's choice! I'm sorry you have to deal with all of this and it's very admirable all that you're doing particularly in light of how difficult your father seems to be. It's very difficult to love and care for the unlovable! My mother is a very difficult woman and I have had similar experiences with being "the one" that knows how to deal with her! Not a pleasant position to be in!

My husband was diagnosed with stage III.b. colon cancer in July of 2007 and has had multiple rounds of chemotherapy (I'm always impressed when caregivers remember how many rounds of chemo. they've been through and how frequenly, etc.; I always forget these details) and several surgeries and emergency situations and, I will tell you, it has been hell! Having watched my husband go through all of this, if I ever get cancer, I will have to think about whether or not I would go through treatment - I think the doc's would have to give me some really good odds! I think (we don't really know until faced with this terrible dilemma) that if I were late stage, I would not go through treatment. I'm a pretty positive person and I have believed the whole time that miracles happen and that there always was a chance that he would make it through, at least for a while. Well, the miracle was not to be for him - we're currently having hospice come in and my husband is dying - it's a very difficult thing to go through and a difficult thing to watch. Of course, even without treatment, dying from cancer would not be easy. A hospice social worker gave me some advice to help my children with the dying process - she said that coming into the world is not pretty and going out is not pretty either. It's very painful. I guess my point is that neither path is going to be easy and it is his decision. The role of the family really should be to just support him and be there for him and, hopefully, support each other! I know there are many situations where this doesn't happen.

It sounds as if you may have to, at some point, just lay it all on the line for your family as unpleasant as it may be. They should not be giving you or him a hard time about what your father's wishes are! It sounds as if you've done all you can do to present all sides of the scenario for him and now, he being an adult, has the right to choose. My grandmother chose to not live on a machine - she had emphysema and the doc's told her if they took her off, she would die within 24 - 48 hours. She chose to not live that way and she did die within 48 hours and, honestly, I didn't find it to be terrible. It was actually comforting. She lived her life the way she wanted to and she made the choice to die when she wanted to - she was ready to go. What a great choice! We're all going to die and we should be able to do it the way we want to.

We are christians and, honestly, I'm looking forward to when my husband will be at peace. He has truly suffered and so have we right along with him watching him suffer. None of this is easy but it is life.

As I read your post, my feeling was that I felt very badly for you - it seems as if you felt the need to justify every action you've taken and to lay out every detail - as if you're feeling guilty about supporting your father! You sound like "such a good adult" about all of this and I really hope your family will mature and jump on board with making the rest of your father's life as pleasant as possible. I think a really great side effect of that will be that you all can support each other and, hopefully, turn this around.

You certainly will have lots of support on this site - I can't imagine anyone here would argue with your choice to honor your father's wishes!

Take good care of yourself - let yourself off the hook - and good luck!

Barbara53

denial and delusion
I agree -- your job is done, and admirably so!

I'm caring for my mother, who has late stage ovarian cancer. She is in total denial that it is cancer that is making her feel so bad, and bounces from one possible explanation to another for her symptoms, but never cancer. Two weeks ago, when she had to fill out a health history form in a doctor's office, I had to make her write down ovarian cancer on her list of surgeries (it was only last year). It would do me no good to correct her, so for the past six months I've pretty much let it go. Instead, I've marvelled at the gentle way denial protects people from bad stuff they really can't handle. And every once in a while the "veil" of denial slips, and Mom talks and acts like the terminal patient that she is.

I do want to add that your father may open up a bit as he gets closer to the end, perhaps telling stories of his youth you've never heard, or revealing hidden family secrets. My mother has been difficult in her way for as long as I can remember, but the stories she's shared in the last few months have helped a lot of things make sense. I never understood why she was soooo high maintenance, but after listening to tales of her early childhood, I finally get it.

tigrita

Barbara53 said:

denial and delusion
I agree -- your job is done, and admirably so!

I'm caring for my mother, who has late stage ovarian cancer. She is in total denial that it is cancer that is making her feel so bad, and bounces from one possible explanation to another for her symptoms, but never cancer. Two weeks ago, when she had to fill out a health history form in a doctor's office, I had to make her write down ovarian cancer on her list of surgeries (it was only last year). It would do me no good to correct her, so for the past six months I've pretty much let it go. Instead, I've marvelled at the gentle way denial protects people from bad stuff they really can't handle. And every once in a while the "veil" of denial slips, and Mom talks and acts like the terminal patient that she is.

I do want to add that your father may open up a bit as he gets closer to the end, perhaps telling stories of his youth you've never heard, or revealing hidden family secrets. My mother has been difficult in her way for as long as I can remember, but the stories she's shared in the last few months have helped a lot of things make sense. I never understood why she was soooo high maintenance, but after listening to tales of her early childhood, I finally get it.

past present and future
Thank you all for the replies and support.

Early on, when he was diagnosed, and also was an extremely high risk surgical case, I made the decision to support his choice not to have surgery because of the risks. It was clear he understood the consequences of his choice, it was an informed decision. Even though there is a good chance he could have been cured (non-invasive/non-metastatic colon cancer), there was also a good chance that he wouldn't make it through the surgery or complications thereafter.

Now, what is making it hard, is new symptoms that may indicate metastasis, or some other new severe problem, and he won't see the doctor about it. He's also lost a ton of weight and his heart is squared away now, which dramatically improves his prognosis as a surgical candidate, but he won't go see the surgeon or oncologist again to even touch base. It is hard not to "give him a bad time" when he's in a boat that is obviously sinking and says he's fine. I feel like the issue now is mental, like he doesn't really want to get better, that he doesn't see much to live for, and it is hard not to feel guilty and ashamed that I, as his daughter, can't give that to him. But, like I said, he doesn't buy into psychology or touchy feely stuff, and would never see a therapist or psychiatrist, or open up to family about his condition and emotional state.

Anyway, as hard as it is to accept watching his boat sink as he stands by with an "ignorance is bliss" attitude, I have indeed accepted it. Writing this letter was a very good way for me to difinitively do that and thank you for reading it and supporting me and my father.

And Barbara53, part of this process for me, in preparing for what I know the family is going to be going through, as well as in an effort to make sense of my experiences with my father so that I can heal and have a positive relationship with him before it is too late, we have been talking a lot about his past. Stories about my grandparents on his side who I never knew, his experiences as a young man, what made him who he is, the positives and the negatives. For the first time I'm seeing my father as a whole person rather than an angry, one-dimensional dark presence in my life, and I am very glad of it.

Thank you again,

Tigrita

inkblot

Doing right by your Father...
Hi tegrita,

You are a wonderful daughter in my humble opinion. You are caring for your Dad in the best way possible. You have made sure that he understands all the options for treatment and have accepted and respect his decisions. Our love, support and care cannot be based upon whether someone is choosing what we want them to choose. Your Father has the absolute right to refuse medical treatment. When we care, we are there for support, period. You will forever have the solace of knowing that you did your best for him and chose not to spend his time or yours, fighting, arguing and trying to coerce him into something he clearly doesn't want to do. So much with cancer treatment, whether that's medical, alternative, integrative or otherwise, rests upon the person's trust and belief in what they have chosen as treatment...even if that's no treatment. I believe you are bringing both your Dad and yourself peace in your approach. It is the best gift for both of you. As someone alluded, in spending time with him, he may begin to want to share more of himself in a way he never has previously. My take on that: Better late than never. You may discover a man and a bonding which you could never have envisioned before. Enjoy whatever time he has, whether that's a few months or many years and let it be whatever it is. I applaud your wise approach and only wish other family members could come to the same understanding you have reached for yourself. All the best...
Love, light & laughter,
Inkblot

AKAngel

Doing right...
Wow...I feel so much of what you're feeling about your dad, with my mom. She is difficult beyond words and patience, and sometimes I don't know whether to just agree with everything she wants just to make her less upset or to fight with reason and logic and escalate an emotional state that she has very little control of anymore. I too can only try to offer what I can, but totally agree that denial and anger(in the case of my mom) are stronger sometimes than all the love and caring you can give to a person who's dying. My prayers to you, and what strength I can share out. This load is a heavy one.