My Dad Is Terminally Ill... Kinda.

[Roxy]

So, here's my story. I'm twenty years old, and losing my dad. A little background: My parents split up when I was two, and I lived with my mother (who was a twisted, messed up person) until I was thirteen. I moved in with my dad after my mother's boyfriend raped me and my mother did nothing about it and even denied it. My dad and I never had a traditional father/daughter relationship, we were always more like friends or roommates. I was pretty shut down when I moved in with him, and he just wanted to make me feel better, but he's got issues of his own. So we had a really conflicted relationship, especially because he has a temper and I'm stubborn, so we got into fights a lot, and he was kind of manipulative. It got worse when he got sick, he legs started swelling up and the doctors somehow missed that he had diabetes when even I knew it, and didn't treat it for months, plus he smoked and ate badly, so he got really bad and I dropped out of school after 10th grade to take care of him. He still wasn't very nice and was pretty verbally abusive sometimes, and still tried to manipulate me. I even stopped talking to him when I was seventeen and got married, because he was blackmailing me for money and it was making life with my fiance/husband hard. I started talking to him again when I found out he had a heart attack, and I was willing to forgive him if he agreed to treat me fairly and stop being manipulative and cruel. He agreed and has pretty much stopped. That was 2007, he'd already been sick since early 2006. Now, it's 2010, and he's worse than ever. He finally stopped smoking but it seems like too little too late. He weighs ~400lbs, he still eats the wrong stuff and too much of it, his legs are all scarred up and he had recurring infections, and they've even talked about amputating his legs but he probably wouldn't survive the surgery because he's so prone to infections. He's now on oxygen, and in the hospital a lot, always on new meds or more meds, etc. They recently diagnosed him with congestive heart failure.

The thing is... is he dying? You'd think it's an obvious yes, especially the way he's started making requests for what to do after he's gone, funeral stuff. I'm his only child, so it's all on me. But in 2006, they gave him a year. After the year was up, they gave him another. After that, six more months. And six more. And six more. Now they just say.. "He could live years, could die tomorrow." He's always sick, always in pain, even has talked about suicide to end the suffering of always being sick with basically no hope of getting better. He's "stable" but he's miserable, he hates living but he's afraid to die. I've gone through more stages of grief, anger, denial, frustration, whatever... there isn't a book for this. I've found stuff about people dying slowly over a year tops... what about this, though? Four years of him going in and out of critical condition, getting "expiration dates" placed and replaced time and time again... and it's just overwhelming, to the point that I'VE gotten depressed, gotten to the point where I feel hopeless. I feel like a terrible person because he's my dad, of course I want him to live, but... I also don't want him to be in so much pain, and this constant back and forth has gotten tiring for me. I want him to be "okay again" but the reality is, he's 50, he'll never be "okay again" after all of this... I don't even know if he wants to be. He says he does but he doesn't make the effort. So then I feel like, maybe I was a terrible daughter and since he has nobody else, I'm not a good enough reason to want to live.

(A note about me: I was.. trained, if you will... by my mother, to find ways to blame myself. I'm aware of this personality trait and am working on it... but being aware of the fact that I'm taking blame and burden that isn't mine onto myself, doesn't make me feel less that way in the moment.)

I am seeing a therapist, but... can anyone relate, give me tips, support... just knowing someone understands would be nice. My husband is more than supportive and helpful, but... he has both of his parents, and can't really relate, and... I just feel so alone in all of this confusion and so overwhelmed. Sigh.

[annette85035]

Hello Roxy-I"m new here as of yesterday.

I myself have been thru things in my life that I can't "forgive/forget" even though I am told that forgiving is part of life.

A relative of mine was sexually abused by one of her parents so I"m a Lil familiar with what you're talking about.

Your father is very ill and perhaps in a way-he needs your forgiveness so he needs you around more?

BUt there is only so much you can do-you have your own family to care for,especially yourself.

Is it possible to have an live in nurse for your father? Are there any groups(persons) that can come in and speak to your father? I know it isn't easy to tell a person in so much pain that they aren't alone in this. Life is too precious to give up on it so quickly-gotta fight all the way!

You have come to the right place I think,so please stick around.

[MartyT]

Roxy, dear ~ I'm so sorry to learn of the burdens you're carrying as you cope with your father's health problems. I don't know what, if any, support you've sought from any outside sources, or whether they've been of any help to you ~ but it seems to me that your father's health issues are much too big and complicated for you to be handling all alone. Have you talked with your dad's physician? Has there been any discussion with his doctor about calling in hospice, which would expose you and your dad to an entire team of care givers for your family? You might want to spend some time on the Care Giving page of my Grief Healing Web site, which contains links to dozens of resources that you may find helpful . . .

[ARiddle729]

Hi Roxy,

I am sorry I can't offer you much in the way of advice, only support and ears to listen. I think you are doing the right thing by looking for the answers. You sound like you have a good head on your shoulders and you are to be commended for taking on some responsibility in your dad's time of need.

Please do not blame yourself for the way your mother and father treated you when you were just a child. They were the parents and should have been the responsible ones to love and protect you. However, that is in the past and you should try to forgive your father and yourself for things that have happened. Put them behind you and do the best you can for him now.

This is certainly too much for you to bear alone though. I hope you can find help in some of the ways others have suggested. I am glad you have a supportive husband, lean on him and accept all of his love and support. Keep searching for your answers and come to this site as often as you need to for advice, support, and listening people who understand your pain.

I can tell you are really torn up with all of those emotions that are overwhelming you. Please make sure to take care of yourself and do NOT let this jeopardize your health and life. My husband recently passed away from cancer and I was so lucky that he put my mental and physical health above his always. He prepared me for life without him and I wish I could repay him. Maybe you can find a way to talk with your dad about the emotions you are feeling. Let him know you want to help him but that you have to be in good shape mentally and physically to do so. I know he cares for you and probably has his own feelings of guilt and regret for the past also.

I believe in prayer and would like to pray for you and your father if you are not opposed to it. You didn't mention if you have any religious beliefs and I do not mean to impose any on you, but often faith and prayer can be a tremendous help in times like these.

Best wishes and best of luck to you

Angie

[Roxy]

Your father is very ill and perhaps in a way-he needs your forgiveness so he needs you around more?

BUt there is only so much you can do-you have your own family to care for,especially yourself.

Is it possible to have an live in nurse for your father? Are there any groups(persons) that can come in and speak to your father? I know it isn't easy to tell a person in so much pain that they aren't alone in this. Life is too precious to give up on it so quickly-gotta fight all the way!

In a lot of ways, I've forgiven my father, not just for what he's done.. but simply for being human, for making mistakes, because we ALL are human, we ALL make mistakes, we ALL hurt those we love at some point, and because we ask forgiveness, we should also give it. I can't withhold forgiveness for something I am guilty of myself, you know?

My father doesn't have a LIVE-IN nurse, but a couple of nurses visit him every day, and he has a homemaker, his doctor does house-calls, he has wrap-around services for his mental health needs as well and a case manager, as well as a someone to do his shopping for him. He doesn't drive anymore, and he has people to give him rides anywhere he needs to go. And he has a cat that keeps him company and "looks after him" for me... she's a huge comfort to him.

My dad isn't much of a talker, but he does have a therapist, so hopefully he's talking about how he's feeling, even if he won't talk to me about it.

I don't know what, if any, support you've sought from any outside sources, or whether they've been of any help to you ~ but it seems to me that your father's health issues are much too big and complicated for you to be handling all alone. Have you talked with your dad's physician? Has there been any discussion with his doctor about calling in hospice, which would expose you and your dad to an entire team of care givers for your family?

I do have a therapist who is helping me cope and such, but I've just started seeing her, so we haven't gotten very far. I do speak with my father's physician about once a month for updates, but he will NOT give me a timeline, because their timelines are always wrong, so I never know what to expect. He's also very vague, which is frustrating. I also talk to my father's case manager, but she's worse... she's a bit of a space cadet, and doesn't answer her phone much. And my dad can only tell me so much because his memory is going, so he forgets a lot of things.

Hospice isn't an option because there is nothing that says he'll die within six months, first of all - could be tomorrow, could be in a year, could be in five years. It depends on how many more heart attacks he has, and if he survives them, if he can lose weight, how bad the infections get, if he quits smoking and stays that way (he's cut back a lot but admitted today that he still smokes a little)... a lot of factors. He also REFUSES to be put in a care facility, he's really independent (at least mentally) and he'd rather die than be in a home, period. In fact, I would reckon to guess that he would end his own life before allowing himself to be put in any facility like that. He likes having his own home, he hates admitting that he's sick, and he's extraordinarily anti-social with a very unique sense of humour and an ability to offend most people his age because he is simply not fifty in his own mind.. he's about twenty-five.

But the team of caregivers is pretty much in place at any rate. It's hard because my husband and I live 1700 miles away now (couldn't afford to stay there and for me to go to college, so we moved to where he's from, Oklahoma, where the cost of living is nada practically, so we could afford our own place and for me to go to college and start my career) and so I can't just barge into his doctors office or wherever and demand information, I have to try to get ahold of people on the phone, which is a right pain in the arse if you know what I mean.

I am sorry I can't offer you much in the way of advice, only support and ears to listen. I think you are doing the right thing by looking for the answers. You sound like you have a good head on your shoulders and you are to be commended for taking on some responsibility in your dad's time of need.

Please do not blame yourself for the way your mother and father treated you when you were just a child. They were the parents and should have been the responsible ones to love and protect you. However, that is in the past and you should try to forgive your father and yourself for things that have happened. Put them behind you and do the best you can for him now.

This is certainly too much for you to bear alone though. I hope you can find help in some of the ways others have suggested. I am glad you have a supportive husband, lean on him and accept all of his love and support. Keep searching for your answers and come to this site as often as you need to for advice, support, and listening people who understand your pain.

I can tell you are really torn up with all of those emotions that are overwhelming you. Please make sure to take care of yourself and do NOT let this jeopardize your health and life. My husband recently passed away from cancer and I was so lucky that he put my mental and physical health above his always. He prepared me for life without him and I wish I could repay him. Maybe you can find a way to talk with your dad about the emotions you are feeling. Let him know you want to help him but that you have to be in good shape mentally and physically to do so. I know he cares for you and probably has his own feelings of guilt and regret for the past also.

I believe in prayer and would like to pray for you and your father if you are not opposed to it. You didn't mention if you have any religious beliefs and I do not mean to impose any on you, but often faith and prayer can be a tremendous help in times like these.

First of all, support is the greatest thing for me right now - thank you so much.

I have tried to remember that what's past is past, and my therapist and I have begun working on me forgiving and letting go (see my comments about forgiving him for being human, above). I'm lucky to also have perhaps the world's most supportive husband, and he helps me in more ways than I can describe. I am glad to be not alone, and to have a shoulder to lean on when necessary... which seems to be a lot. I'm learning to reach out to people who care about me, and to people who can help me, for the help and support that I need. I tend to be very stubborn and independent.. perhaps I take after my dad? .. and so I tend to keep everything inside. It's been a long journey for me to even get to where I am now in terms of reaching out for help when I need it.

I am so very sorry for your loss. I am, however, glad that your husband was such a wonderful man - we are not oft blessed to be in the presence of incredible, caring people in life, and each one who touches our lives deserves to live in our hearts forever. I wish you all of the love and support in the world through your grief, and I pray that you will celebrate his life, even as you mourn the loss of him, and remember all of the good that he did and the wonderful person that he was.

Emotions, for me, are hard to handle, and it is nice to know that I am not alone in the way that I feel, and that others understand how overwhelming and painful this experience is. I would not wish this pain on anyone, and yet it comforts me to feel understood, if that makes sense.

I try to tell my father how I feel, but he is not much of a sentimental-touchy-feeling sort of guy... he can be sort of cold, if you understand? I do make it clear when possible that I want him to take care of himself, that I love him very much, and that I believe in him and his ability to recover at least partially and live a few more years if he would just believe in himself and try. He is very stubborn and stuck in his ways... talking to him can sometimes be like talking to a brick wall! But I keep trying, and hope that, somehow, it's sinking in.

I am spiritual... not necessarily Christian, but I do believe in a higher being, a "God" if you will, and I do pray. I appreciate your prayers and good will toward me and my father, and would not be opposed to that at all - it is a blessing to have perfect strangers so willing to reach out to me and support me, and I do believe that we can use all of the help that we can get right now.

[ARiddle729]

Roxy,

You are wise beyond your years. I admire your strength and determination to do the best in this situation.

Just wanted to comment on the above quote....I know exactly the type of person you mean. I come from a long line of them. Men especially and women also in my family are definitely not the sentimental-touchy-feeling type. I myself am having to struggle to overcome that nature. We can seem so cold, but inside thoughts and feelings are struggling to get out and just WILL NOT pass through the vocal cords. There are so many times I wanted to share some raw emotions with my husband and I just couldn't do it. Often, emotions and anger at myself came out as anger toward him. I knew it was happening and still couldn't stop it. Outwardly, I seemed like such a cold, uncaring person - always seemed mad at the world and under constant pressure. My husband never gave up on me. He put up with so much, was nothing but supportive, and continually expressed his wishes for my happiness. So, even if your dad is never able to tell you how much he loves you, never able to share his pain with you, and never able to change that attitude, he is listening to what you are saying. Your expressions of love and encouragement are working on him. You are making a difference. I hope you do see a change in his nature and his is able to start sharing with you, but if he doesn't change, it is not your fault. You are doing exactly right by trying. My husband worked on me for a long time and it didn't change my outward expressions. But inwardly, I was deeply effected by his expressions of love and caring and it is starting to show a little outwardly in the way I relate to those I love now.

Best of luck

Angie

[sari]

Roxy-

my stepfather gary, was not sick (well, he had diabetes, and because of our(my moms and mine) experience with my real dad, we thought a bad heart. his doc didnt agree (long story)) but he was passive agressive, bullheaded, and to much of a narcisist to see anyones opinion but his own. in truth, he gave me more random bruises just my walking by me than i got with soccer and middle school combined. But- he died over the summer, and it was kind of a relief to me because he never let up. i felt guilty that i never cried, but i never relly loved him, so... i am 14. my real dad died so long ago i dont remeber him, and i had a scare with my mom not long ago when an idiot made a left turn in front of her while his light was red. really, i think just i dont know... im thinking lots of things, but i cant seem to put them into words. i can try, and im sorry if this is confusing. you are... an angel, who given the circumstances, coulde be a wonderful reason for your father to live. my stepdad had 2 sons, and he was so alike to one that they could never get along. the angel thing actually has symbolism if you knew anything about me, as i write poetry, and one of my poems is about angels. your dad might just not be able to send the messages that he loves you because he does, of this i am certain. its not your fault, any of it. there is a woman at my church who had lung cancer. she was in and out of the hospital, lost one lung, and now is as healthy as the next person, minus a little stamina because of the whole one lung thing. randy, the son who is so much like gary, scerwed up his life a year or so before gary died. somehow he rediscovered God and now has a house, a steady job, and is engaged. he completely turned his life around. in my head this made sense, im sorry. i already used my whole allowance of good wording today, since i wrote a poem earlier. (lol) well, if you can make sense of wjat i just typed, i hope it was at least interesting.

-sari