I Hate Dialysis Message Board
Off-Topic => Other Severe Medical Conditions => Topic started by: KarenInWA on January 21, 2013, 06:55:36 AM
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Hello everyone,
I started dialysis in April 2011. In June 2011, my Dad was diagnosed with Stage 3 esophageal cancer, and had to undergo chemo and radiation. He also had a major surgery on Nov 1, 2011 to remove his esophagus and have a "new" one built using his stomach. His stomach is now a "tube", so he cannot eat large meals, he has to eat many small meals in a day. He was pronounced cancer-free in the first quarter of 2012.
I had my live-donor transplant on Nov 23, 2011. Needless to say, it was a crazy medical time for my family.
My parents live 50 miles away from me. My mom was his care-taker for all of his illness during 2011. I had another family member stay with me after my surgery, and was able to drive at 2 weeks. I did my thing, they did theirs.
In April 2012, I had a biopsy on my kidney, then a few days later ended up in the hospital w/a large, obstructing hematoma, acute kidney failure, and had to have emergency surgery. I couldn't drive for just over 2 weeks, and my parents took me in for some of my recovery. Dad was doing fine at that point, he was just a bit skinnier than he was before. (all told, he lost around 100lbs due to cancer, but he was overweight to begin with).
A little background info that I have talked about on here before: When I was getting listed for my transplant, I needed to come up w/a "post-op plan". Who was going to take care of me during recovery, drive me to the hospital for lab draws and dr appts, help me w/laundy and shopping, things like that. My parents (mainly my mom, since she has always worn the pants in their marriage) REFUSED to help me. This was before Dad was diagnosed with cancer. All they did was sit in their recliners and watch tv all day, go to her dr appts - she LOVES medical attention on herself - and do the occasional day trip, go shopping etc. She thought the hospital was asking for too much when they said I needed to be their for 8am blood draws.
To try and make a long story short - Dad's cancer came back. Stage 4, chronic. Chemo once every-other week. CT scan after doing chemo for a while showed lumps in his neck/lymph node area. Add radiation to the list. He's been doing awful lately. He's lost more weight, isn't eating a whole lot, is dehydrated and getting IV fluids (refuses to drink), and lives with my mother, who is his only outlet. My parents have no friends. My mom has driven her family away. Dad is losing all hope or will to live. And I don't blame him. If I were him, I would do the same.
My parents have made some very poor financial decisions in their life. They are now in retirement - ages 65 and 69 - own a house that they are upside down on, own a 2012 mini-van that they make payments on, have credit card debt and medical expenses. The house I grew up in they owned for 30 years, and had NO equity in it. When my Dad passes (which I am afraid will be soon) my sister, brother-in-law and I will be stuck with this woman running, or trying to run, our lives. She won't be able to live in that house, or keep that mini-van, and will go back to her old ways of going to various dr's and complaining about all of her various medical issues (all of which could have been avoided had she only gone to a PCP and excercised, etc in her life). I am also angry because I know if Dad had gone to a PCP in his life (which my mom has a personal vendetta against) his cancer would have been caught at a MUCH earlier stage and we all wouldn't be in this situation right now. (Dad worked at Boeing for 41 years. They have excellent insurance that doesn't require you to get a referral. That has been her mantra for years - she doesn't need a referral. She goes to specialists).
So, here is my dilemma, and it's going to sound selfish. I know I am going to lose my father soon. It sucks, but that is the reality. Unless some sort of miracle happens (which hey, is possible). I am afraid of my mom taking over my life, which I just got back in the last year. My transplant is not up to par, due to the biopsy-induced injury. I have my own medical worries to think about. I also want to live my life to the fullest while I have the combination of a good-paying job and a good-enough kidney. This is MY time. But all I can foresee into my future is a life of Hell where my mother is concerned. I know I didn't tell enough of the story, but if you knew my mom, you'd understand totally and completely where I am coming from.
KarenInWA
EDITED: Moved to other medical conditions thread-kitkatz, Moderator
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Oh, Karen, this is all just such a shame.
I don't know your mother, but I think you gave a solid overview of her and I now fear the same for you as you do for yourself. Anyone who has met a self-centered martyr/drama queen (isn't that all of us?) can relate to some extent to what you are talking about.
I have one word for you, keep it cemented in the front of your mind and on the tip of your tongue: BOUNDARIES. Know what they are for you, insist on them, plan ways to defend them. This is not selfish, it is the opposite - you were given a kidney so that you could make the most of it, and you have an obligation to live your life as well and as happily as possible to honor this gift. If your parents were truly in need and capable of benefiting from your attentions, that would be a different story, but that is not what I am hearing from you. All of us recipients are ambassadors for donation and it would be a waste, in my rarely-humble opinion, ;) to devote extra energy to a toxic relationship. Grab the reins and tell your mother what you are and are not willing to do and/or discuss. Be prepared to reiterate this ad nauseum. Use the clearest, least-emotional language you can muster and practice ending conversations if she cannot respect your position, as in "Mother, I've told you my feelings on this already. I'm sorry, but I really have nothing left to say on this topic. I am going to hang up now, please feel free to call me back when you are ready to move on." (Adjust as necessary.)
Good luck on this. I know it's a draining experience.
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wow i had no idea! Im sorry your dad isnt well. that cant be easy. and stressing over this isnt helping im sure...
i know someone like that, it ultimately caused problems between my brother and his wife (among a lot of other issues, mind you) and her mom is STILL causing issue, when reguarding their child (my neice!) she even moved in with my bro and his wife for a while... shes like that. So, i kind of get what your saying...
idk really waht to say, but i like what cariad said... but knowing ur a good person, thats probably easier said than done... i know it would be hard for me to do that!
sometimes though, thats what has to be done.
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Karen, you will ultimately be the one who has to live with yourself, the choices you make and the consequences of those choices.
I agree with cariad; create boundaries that you feel you can live with.
My only concern is for your emotional wellbeing. I don't want ANYTHING to mar the joy you should be getting from your new lease on life. I would hate to think that once your mom is gone, you might feel guilt that you "didn't do more", kwim?
Getting a new kidney gives us a chance to live a "normal life", but unfortunately, dealing with troublesome family members IS a part of normal life.
I know you are not a selfish person. Anyone, whether they have a new kidney or don't need one, would have to create boundaries when confronted with these sorts of issues. No one should spend extra effort on a toxic relationship; being an organ recipient doesn't make us special or make our lives more valuable. Maybe it gives us an insight into just how fragile life really is, but it doesn't give us an excuse to become selfish or self-centered.
Hmm...I think I'm sending mixed messages here. I guess what I am trying to say is that the fact you have a new kidney is irrelevant. It doesn't change the fact that your father is seriously ill and that your mother is seriously toxic. It doesn't change the fact that you know your mother will try to infiltrate your life in the not too distant future, and it doesn't change the fact that you will need to set boundaries (again quoting cariad) that will let you lead a guilt-free life.
Am I making any sense at all? LOL! You mother won't make your life hell unless you let her.
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I agree with cariad. Set boundaries and stick with them and don't get emotionally blackmailed. Be strong. :grouphug;
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When I let my dad move back in with me for a bit, it was very uneasy. We don't talk much, but just to have him there gave me cringes. When I wasn't working 2 jobs, I spent time in my car just somewhere in a parking lot, at a fast food joint, or somewhere to kill time. It was very uneasy. You do not want that fealing.
How to avoid it remains to be answered if you let anyone you already feel uneasy about moving in.
Have any friends who need to rent a room for a year?
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being an organ recipient doesn't make us special or make our lives more valuable.
Just to be sure I'm making myself clear, this was not what I was suggesting. Being an organ recipient in and off itself does not make someone necessarily "special" (although recipients usually require some special considerations) and definitely does not make anyone more valuable (I don't like anything that ranks the value of a person's life, so I would definitely not intentionally go there).
The reality of Karen's situation does put her in a unique position in which, unfortunately, she may not get as long off dialysis as the average recipient. If I were a donor, I think I would want the person to whom I donated to do everything within reason to live life to the fullest. But then, I take a notoriously hardline with toxic people and have no patience for martyrs who claim that they have no choice but to continually put themselves in the line of aggravation. I do understand the feeling of obligation when it's one's mother, but I think it's best to decide on a minimum level of contact that you feel will fulfill your obligation to this person. When it's acquaintances of Gwyn's that I cannot stand, for example, I operate on a strict no-contact policy. I am not shy about politely turning down invitations when it's something I don't really want to do. It drives my own mother crazy, because she sucks at cutting awful people out of her life and I really don't.
Maybe it gives us an insight into just how fragile life really is, but it doesn't give us an excuse to become selfish or self-centered.
I don't think it's selfish to cut a toxic person out of one's life, or at least sharply limit interactions with them, so I guess I agree that being a recipient doesn't necessarily give one excuses to be selfish/self-centered, but that Karen's thoughts on this were not in the least bit selfish. Being a mother does not give one the right to be a nightmare to one's children, either. To me, giving attention to the type of person she is describing (her mother) who does not want someone to help solve her problems, she just wants attention for having them (and it sounds like some of them are completely fabricated), to feed into that is akin to enabling an addict. I don't think having a serious, chronic condition and a sense that one's days of freedom from dialysis could be numbered is irrelevant. True, it cannot be generalized to all recipients since many don't face these setbacks, but I do think it lends a sense of urgency to Karen's situation and an understandable drive to make the most of the time she has with this kidney. Having a live donor perhaps increases the pressure somewhat to prove that the whole donation was worth it. I don't see it as selfish, (self-centered maybe, but I don't see being self-centered as always a bad thing) I see being a recipient as excellent motivation to assert oneself in a situation that calls for being assertive.
Ack, I'm tired. I don't think I expressed myself very well but it is gone midnight so I'm going to stop thinking aloud for the night.
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Cariad, I don't disagree with a single thing you've posted. While it is true that having a statistically shortened lifespan certainly can serve as motivation to cut as much toxicity out of your life as possible, the same should be said for any healthy person, too. Healthy people should also cut out as much toxicity out of their lives as possible. I think you perhaps have taken my comments and have given them the opposite meaning to what I intended to say, which is that whether you have good health or a chronic condition, you still have to live with the consequences of your decisions.
If I were a donor, I'd want my recipient to live life to the fullest, too, but that's defined as living a life that you are happy with. Perhaps I would have made different choices, but if I donated a kidney, it would have been with no strings attached. I wouldn't dream of demanding any say in what those choices should be. I'd just want my recipient to be happy with the choices s/he DID make.
I haven't for a second thought that Karen's musings about future interaction with her mother showed any selfishness on her part. Whether I think she is being selfish is completely irrelevant, anyway, but if SHE is thinking she is being selfish, then THAT is another matter entirely. Only SHE can predict the emotional consequences of her future choices on the subject. I've seen waaaay too many posts from IHDers that express guilt or remorse for feeling one way or another, for acting one way or another, for doing one thing or another, and I don't want Karen to EVER feel these things. Like for everyone, what I want for Karen is to feel confident that she will be happy with whatever boundaries she decides to erect.
I hope, Karen, that you don't ever feel compelled to prove to your donor that her sacrifice was worth it. And I hope that just because you are a recipient, you don't feel this need to be some sort of saint. At the same time, I KNOW you don't feel that because you have this new lease on life, however temporary it may be (and you may be surprised in this regard, at least I hope so!), to hell with everyone else! This is why I say that being a tx recipient is "irrelevant". Setting boundaries and removing toxicity are valid goals whether or not you're a recipient.
Cariad, I know you have become a master at reducing the toxicity in your own life; you've posted about it here on IHD, and many of us could a thing or two from you. I had never felt the need to restrict contact with anyone until about 10 years ago; never had I imagined having to do so or even being ABLE to do so! But I have surgically removed certain people from my life and thoroughly enjoyed the process, it must be said. I already had enough fear and dread in my life as I battled to retain some semblance of health, and I felt no remorse it refusing to have contact with these people. But I have to be honest and say that now that I have a second lease on life, I find that my heart has softened. I don't know how much life is left in my kidney, but if I was given a second chance, then maybe I should give others a second chance, too. My battle has left me wiser and with a better notion of how to deal with toxic people. They cannot poison me unless I let them. My heart is softer but my armour is more battle-hardened.
And back to you, Karen. You are smart and you are kind. I am convinced that you will make a well-considered set of decisions that will protect you from both manipulation and from guilt. You know your mother, and I know you will find a way to keep yourself from being dragged into her endless theatrics. Thank you for trusting us enough to pose these questions on IHD. While we may not have all the answers for you, I hope you know that we would never think you selfish. I hope all of the replies have convinced you of that! :grouphug;
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i wish i could be more like you guys, cutting toxic people out with no problem....
id have to admit most of the people in my life are toxic... and i honestly dont think i could... im "too nice" and i hate it.
seriously, seems like once a week someone gives my life an undue drama! if not more often. and typically it seems when one thing hits the fan, a few others follow suit.
i really hope that you, Karen, can find the strength that I dont have, if thats the route you choose. Like I said, so much easier said than done for some people, especially when its family, :cuddle;
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Cariad, I don't disagree with a single thing you've posted. While it is true that having a statistically shortened lifespan certainly can serve as motivation to cut as much toxicity out of your life as possible, the same should be said for any healthy person, too.
Definitely it should happen with healthy people, but truth be told, most of the time, it doesn't.
I think you perhaps have taken my comments and have given them the opposite meaning to what I intended to say, which is that whether you have good health or a chronic condition, you still have to live with the consequences of your decisions.
I agree that we have to live with life consequences, all of us. I think I was more responding to Karen's original comment that this is *her* time. I don't think anyone here could fail to see where she is coming from with that feeling, and I do think that is entirely relevant. I'm watching my cousin go through this from afar. He was diagnosed with stage 4 brain cancer in his mid-20s (I know I've told this story way too often) and is alive well past what the statistics said, but he could be described as self-centred in that he is focusing almost entirely on himself and what he wants to get out of life. No one is begrudging him that, I think everyone close to him is relieved to see that he continues to go out and live life. He's getting married in a few months. He has a job that I really, really (REALLY) disagree with on principle, but it is a job he feels he can manage, it pays the bills, and keeps him feeling useful. Were it a healthy person with that job, I think I would probably be inclined to demand to know how they can live with themselves. (I spoke to my brother years ago about this - he is very close to this cousin - and he said rather sheepishly "I kind of agree with you....")
If I were a donor, I'd want my recipient to live life to the fullest, too, but that's defined as living a life that you are happy with. Perhaps I would have made different choices, but if I donated a kidney, it would have been with no strings attached. I wouldn't dream of demanding any say in what those choices should be. I'd just want my recipient to be happy with the choices s/he DID make.
Whoa! Stop right there! :police: :police: :police: :police:
:rofl;
As I think you know, I have not one but two live donors kicking around my life. I do feel I have rather a solid handle on what makes a cool donor and what makes a psycho one. No one is saying that donors should be given a say in the recipient's life, least of all me. In fact in re-reading this, I think we may be saying the same thing. Donors donate to improve lives, not dictate demands to people. I believe most of us struggle a bit with ways to show gratitude to donors without suggesting that there is now this unpayable debt before us. Really, all we can do to show gratitude besides saying thank you is to demonstrate just how valuable the donation is. So what a waste to receive a donation and not do everything in one's power to attain that happiness that you are saying you think you'd want for a recipient. Neither of my donors has ever held the donation over me. My first donor is an odd duck, he never wanted me to do anything specific, but he did want me to find the whole experience as cool as he did.
His view: I get to talk to all these important doctors who are in the news all the time and who are making all of these amazing discoveries, and all I had to do was go through a few weeks of excruciating pain!
My view: These old men keep bossing me around and putting me in pain. I hate them. I think I'll bite one of them if I get the chance....
So, all my original donor really wanted from me was to be able to form some sort of story-telling duo in which we would regale new acquaintances with our fantastic medical adventure! Everyone he knew would hear the tale. I always thought it was a horrible invasion of my privacy, but now, with the distance of time, I forgive him and feel it's a pretty modest desire in the end given the risks he took. (I find it strange that he seems to have no interest in talking to Gwyn about medical experiences. Not many people can say they've donated both a kidney and bone marrow, these two gentlemen can. Weird. I don't think they've said a word to each other about it. :waiting;)
Side note, and I don't mean this as an insult or criticism, just a bit more info on my take on things: I think saying 'I would do this as a donor' is rather like saying what type of parent you'll be. I believe no one really knows what they would do in these dramatic situations until they are faced with them. I've mentioned before that I fervently (stubbornly) believe that I could donate part of my liver. I asked my Dr. about this and he said "they would NEVER touch you". The thing is, I don't really believe it. I feel I could pressure them enough and they would cave (Wearing innocent people down - just one of the many talents I bring to the world!!!) So, can't say I don't know what needs to be done. Can't say I don't know anything about the procedure. Can't say I had no idea live liver donation exists. Can't really give any excuse other than 'for now, I don't think I could put myself and my family through that'. I always say I'd like to think I would have donated a kidney if I had had that option in life, but who knows. I think I would be such an entirely different person had I never had ESRD that I cannot say for sure.
I want to respond to the rest of this (Oh, joy! I hear you cry...) but need to attend to other tasks at the moment. I will come back with Cariad's Top Tips for Dealing with Toxic People. ;)
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given how little you like your mum, based on what you have said, my take on this, is, stick around for your father's sake and then when he passes, cut your mum out of your life. then go and live your life for you. i don't see that as being selfish. you have one life and I don't see why you should live it feeling miserable.
I understand damaging mothers. i won't call mine toxic as I am sure that she doesn't intend to be. i left home at the earliest opportunity and that, I believe, was largely to get away from her. now I live in the US, she lives in the UK and that suits me fine. we talk by phone, but a couple of years ago, I got to the point where I nearly cut her out of my life. i didn't when it became apparent that she was clinically mentally ill, even though I suspect the chain of events that brought this about, were instigated by her as a means of preventing her coming to the US. These events then spiraled out of control and her mental health went downhill from there. the request for her to come to the US was in the event of a live donor transplant, she could come over to be my caregiver during recovery, (in a nominal manner) to fulfill this requirement specified by the transplant unit.
actually, I believe we have a slightly better relationship. she is mentally more stable but I think that she knows the boundaries that I have set with respect to our relationship, and the need for her to be a support person in the event of a transplant are no longer there. I have accepted the fact that she will never visit us in the US, and hat she is missing out on spending time with her grandson (that is her loss).
so the way I see it, for your future happiness, you have two options; firstly, leave things the way they are with you mum, but don't take on her problems. secondly, cut all ties with her, make new friends. by making friends, you may be able to get a support network in place, in he event of a further transplant. good luck ,I know that it isn't easy.
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I wish I could cut my mom out of my life when that time comes, but the truth is, she has no one. She has my sister and brother-in-law, and one friend who is a family member (she set my parents up years ago, and is also the sister of my donor. My donor and her sister married my dad's twin cousins). She has a friendly relationship with some of her neighbors, and a few former co-workers, but no "real" friends. No one wants to take her in. My place is way too small, as is my sister and brother-in-law's. She will need to go into some kind of senior housing, and she won't be happy about that.
I grew up in a house where my mom whined a LOT, and that was how she got her way all of the time. Both my sister and I resolved to not be like that as adults. I remember thinking that I never wanted to be the kind of woman who made her husband and children talk about her behind her back, and have it be in a cringe-worthy way. Now I am 39, and I've found that not whining doesn't win any men over, either, but I refuse to change my ways when it comes to that. I've all but given up on dating, although I now have a new friend from another state that I'm getting to know. He may come out here for a visit. I don't know how that would work with what's going on with my dad's health, though. Obviously, Dad and his health comes first.
So take that as an example of how I don't want my mom to take over my life. I have a handsome new friend who wants to come visit, and if she were to find out about it, she would pitch a fit. Literally. It's none of her business, and certainly not her life. I have had such limited experiences with nice men, so if one wants to come over and visit me, and I want him to do that, then damn it, I don't want her to get in the way! He's a co-worker who I met over the phone, so he's not like a total stranger or anything. This right here is a perfect example of what I want to do before Lynette has had enough. And I sincerely hope that Lynette will enjoy being my kidney for many years to come. Which is why I need little to no stress in my life!
KarenInWA
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My place is way too small,
This sounds like a good jumping off point for at least your mother not being able to stay with you. Best wishes
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i think that you are nicer than me. you could just take the 'you've made your bed , now lay on it approach' and just let her make her own way. just because you are all she has, doesn't mean that you are obliged to help her.
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This isn't easy and will take practice but start now. No. No. Miss Manners says that No is a complete sentence. When you get into explanations it makes it easier for people to break down your wall.
You don't have to cut her off. Decide what your limits are. When it's something you just can't or won't do, say No. It will take time to be comfortable doing this but fake it til you make it. In the end your life will be better.