what to do when your parents won't even get tested to see if they can donate?

[catfish10]

ive been on dialysis for 6 1/2 years and prior to me getting sick i had liver issues, they eventually subsided with 2 liver transplants.  now when i was diagnosed with esrd i thought i had the flu, i was working full time, going to school and living on my own, i was 22.  my mother and father had been divorced since i was 3yrs old so he never really had a role in my life.  but the day that i was medi-vacd to a bigger hospital for emergency dialysis was discovered when my boyfriend at the time thought i had more than the flu and took me to the e.r.  my mom was no where around, not in the hospital nothing.  she then decides that its best for her to work overseas as a military contractor instead of being tested to see if she could donate, or even be there for me.  6 1/2 years later, she still is the same selfish person, whos best interest is her own.  when i try to explain to her why i have sooo many abandonment issues and resentment toward her she simply replies (by text message mind you) "it's 2010 get over it." how can i remain sane and have some self worth with out my loving caring boyfriend?  he is the only one that keeps me going. most parents would give to their child in a heartbeat with out question.  but not mine.  how do i deal with this without wanting to end my seemingly worthless life?

[MooseMom]

Oh, gosh.   How awful for you.  I don't know you and I don't know your parents, so how could I possibly even begin to unravel this?  But the one thing that immediately came to my mind was that your parents' behaviour has nothing to do with you and everything to do with them.  It is all their failing, not yours.  They are seeming worthless parents.  Your parents don't determine how much you are worth.  I'm very glad that you have your boyfriend.   

[okarol]

Without getting into too many details, I will just say I did not have a stellar upbringing by my mom (she was a widow at 26 years old, with 4 kids, so I know it was hard.) She was never supportive or nurturing and I always felt if it weren't for my grandparents I would have gone crazy. The difference in your situation and mine is that I was healthy and able to get out of the house early, and I learned to take care of myself. Now I have a daughter with health issues since she's 15 years old and it kills me to see her struggle. I could not donate a kidney to her, but I found someone who could. Sometimes I worry that she learned to be too dependent on me and her dad that maybe we've done her a disservice. Anyway, my point is that we don't always get the parents we need or want, but we do have a choice. You can choose to let their disregard of you matter, or you can choose to surround yourself with people who care about you. I am glad you have a loving boyfriend, and I hope you will make more friends and not look to your parents for support. Someone once said to me, when I was lamenting the lack of interest or care from my mom, "don't go to a dry well for a drink." It took me a long time, but I now have a friendship with my mom, but she is not one of the intimate people in my life that I go to when I need guidance, love or hugs.
If you need help finding a donor, I will help you as much as I can. Sending you BIG HUGS! 

[catfish10]

Oh, gosh.   How awful for you.  I don't know you and I don't know your parents, so how could I possibly even begin to unravel this?  But the one thing that immediately came to my mind was that your parents' behaviour has nothing to do with you and everything to do with them.  It is all their failing, not yours.  They are seeming worthless parents.  Your parents don't determine how much you are worth.  I'm very glad that you have your boyfriend.   

thankyou for your well wishes. twice already has my mother opted for me to go to hospice to "save her money" on my expenditures being out here in california alone waiting on the cedars sinai list.  she is worthless and my boyfriend has told me that from just about the 2nd day he met her. but ofcourse i figured a parent wouldn't do that to their child?!?  boy was i wrong.

[catfish10]

Without getting into too many details, I will just say I did not have a stellar upbringing by my mom (she was a widow at 26 years old, with 4 kids, so I know it was hard.) She was never supportive or nurturing and I always felt if it weren't for my grandparents I would have gone crazy. The difference in your situation and mine is that I was healthy and able to get out of the house early, and I learned to take care of myself. Now I have a daughter with health issues since she's 15 years old and it kills me to see her struggle. I could not donate a kidney to her, but I found someone who could. Sometimes I worry that she learned to be too dependent on me and her dad that maybe we've done her a disservice. Anyway, my point is that we don't always get the parents we need or want, but we do have a choice. You can choose to let their disregard of you matter, or you can choose to surround yourself with people who care about you. I am glad you have a loving boyfriend, and I hope you will make more friends and not look to your parents for support. Someone once said to me, when I was lamenting the lack of interest or care from my mom, "don't go to a dry well for a drink." It took me a long time, but I now have a friendship with my mom, but she is not one of the intimate people in my life that I go to when I need guidance, love or hugs.
If you need help finding a donor, I will help you as much as I can. Sending you BIG HUGS! 

i can't thank you enough for the well wishes and guidance toward looking at the situation in a different light.  i am glad i found a support group that can somewhat understand how difficult this disease is to handle with minimal parental, or familial support.

[Jean]

It is so sad when parents let their children down. Yours have both been absentee parents, and tha tis really an awful situation to be in. I would never ask them again to be tested, since Obviously, they are not interested. Are you the only child? At any rate, hang on to that great boyfriend and just know you can never count on your parents for anything. Sad, but true.

[lorna]

I feel huirt when my friends or anyone really says so me , let meknow if there is anything i can do to help....but they dont get tested to donate. It seems so obvious to me but they dont live with it daily. I have never met my father he took off before i was born and i sometimes wonder if i tracked him down and asked him what would happen, but then i think if he diddnt want to give anything ever before i dont want this from him now i would rather wait. My mom on the other had has been my support system and is not a match so she cant donate and i am sort of happy about that because i need her as my support when i am in the hospital. But in no way is it a reflection on you and im sorry you have to go through that, and like others have said im glad you have such a good support in your boyfriend!

[KICKSTART]

Sweetheart i know its not much comfort , but you are not the only one with a family like this, i think there are several of us on the forum in a similar situation. Nothing is going to change it sadly. 

[lou]

im so sorry to hear how crappy your parents have been over the situation, it doesnt seem fair. im also so glad you have such a lovely boyfriend. i dont really know what to add but just wanted to say you are obviously a very strong person to have been doing dialysis these years and i hope you can stay positive and have a wonderful life with your boyfriend despite the horrible attitude your mum seems to have. sending you lots of hugs and well wishes x x x   

[cariad]

catfish, this is so sad. You sound like an immensely strong individual, though, and your boyfriend sounds like quite the catch himself.

I cannot say that I have had it as bad as you, nor anywhere close, but my parents were really cruel to me when I was growing up and trying to gain a sense of myself while also battling ESRD. I've found that it doesn't really matter how many years go by, when your parents reject you it is a massive struggle to get over it. My own parents have said similar things to your mother's laughably insensitive "It's 2010...." comment. I feel exactly like OKarol - my parents and I are on fair terms, but they are not one of the people I turn to in bad times. I sense your mother is a very lonely, troubled individual - I cannot imagine she has many genuine friends around her with her attitude. Suggesting a child (even an adult one) go to hospice to save her money is just disgusting.

I am so glad you've found us and I hope you will stick around here. You have much to teach us all about survival and overcoming adversity. 

[RichardMEL]

dear catfish....

(meow)

I can't imagine how you must feel through this - clearly your mother just doesn't consider her child in the same way most parents do and has treated you as more of a burden to her than someone she loves (I mean hospice.. really?!! holy crap!).

I think what you need to somehow do, for your own sanity, is to find ways to accept this situation and to try to not expect anything from this person who is in  your life not due to choice. You're old enough now where you do not need to depend on this person, and you already have a better support system in place with your current bf than what she is or apparently has ever provided.

You have been through so much and come through it... this is important. You are stronger than you think. Still, it might be worth talking to someone professionally about these issues, and to find ways for you to cope with this.

My own mother couldn't donate to me, but she totally would have in an instant if she could - like most normal parents... you do not have normal parents, but I think at this point it's time to try and move past that and concentrate on what you have in your life that IS positive - or who rather - and even if that's just your bf and other close friends - that's a start.

All I can really do is send my best wishes and lots of *huggles* your way - it's a horrid situation you are in and I admire the way you are getting through this.

 

[carla13]

Catfish,

I've been through a very similar situation. When I was first diagnosed with kidney failure I was a very frightened teenager. My Father wasn't around and my mum didn't really come near the hospital, she also wouldn't donate. I had to deal with everything alone and eventually got a transplant from an unknown donor.

This time around, I had my amazing husband with me. Never underestimate the capacity for love that people who aren't our family can have for us. Keep that boyfriend close and keep your mother at arm's length. She is the one who is missing out on a wonderful daughter. Keep all your love for those that will value it and not throw it back in your face.

My husband has just donated a kidney in a paired exchange so that I (we) can have a stab at a normal life. This is true love and unfortunately some people (like your mum with your love) are missing out on this.
I can't say this will never NOT be an issue for you. It's 20 years on since I was first diagnosed, and what my mum did to me still hurts like hell. It will always be a part of you, but you can choose to spend time brooding over it, or you can contribute your time to getting better and cultivating a 'family' (like I have) of good friends around you who will eventually take the place of your relatives.
I'm always horrified when I hear that parents will not donate. If I had a child who was sick I would donate to them in a heart beat! I can only hope that our bad experiences make us better people...

Hang on in there!
hugs,
carla

[VintageVera]

DEAR CATFISH: Here's what I have to say about your parents and the many others here, including myself, with dysfunctional parents: It's up to us to build our own loving, supportive family. That's why I am here on IHD.
     Also worth mentioning is the concept of parental GUILT, in our cases it's the guilt that a child has a chronic life-threatening (and often inherited) disease. My  Mom  was recently able to confess to me that she felt guilty that I got our "family curse." I cried and hugged her and told her that I didn't want her to feel that way. It was good for both of us.
     I think that you're a strong and insightful person and hope to read more from you. LOVE, VERA

[Brightsky69]

I know what you must be feeling. My dad wouldn't get tested for me. Neither would my boyfriend. He actually told me "I wold do anything for you....well almost anything."

[rsudock]

Aw catfish reading your post reminds me so much of my situation too!! Feel comfort in the fact that other people have jerks for parents as well! My mom was a single mom and my dad split when we were little. My mom never wanted to get tested because "How would she pay the bills and be off work?" Her whole life she has resented the fact that my brother and I are sick. Even to this day she reminds me, "Well I did keep you on my insurance when you were growing up and that costs me money!" Like most parents don't put their kids on their insurance...come on?!?!? And now she is obese and in poor heart health so she has an excuse not to donate now. BUT I do have one person to count on and that is my boyfriend! He is wonderful just like your man too! He has stood by me and puts up with my sadness and tears. He's supportive and caring. People like us have to find others who will love and support us outside of the family. Hang in there!!!
xo,
R

[okarol]

It's up to us to build our own loving, supportive family. That's why I am here on IHD.

  Amen!

[Matt58044]

I can sympathize with the thread starter.

When the transplant coordinator asked my father about donating, instead of having the conversation about what he would need to do to be eligible, or hoping that he would be eligible, he sheepishly scrambled to find any excuse he could NOT to be eligible.

"But, I'm 56, I'm too old.  Oh,  you'll take people that old?  But, I'm overweight.  Oh, that doesn't necessarily make me ineligible?  But I'm a smoker, you can't have a smoker donate."  And she said no, they couldn't have a smoker donate, that he'd have to quit.  And then she said that this time was a hard, stressful time to try to quit smoking, a concept which he jumped all over in agreement.

And the sense of relief on his face when he found his escape, that's something I'll never forget.

[tyefly]

Me too....  I feel for you ....   we cant choose are family but we can choose what we can do with our lives....  and hopefully the lives of others....  lots of good feelings here .... and many great ideas....too

Wishing you the best

[Riki]

It's been about 3 weeks since I told my mom about the paired donor exchange being an option available to us.  We knew it existed before, but the govt in Nova Scotia had to ok it first, which they did.  She was all for it before it was ok'd.  She hasn't said a word about it since I told her that it was a go.  I have a feeling she's looking for excuses now too.

[rsudock]

aw Riki and Matt sorry to hear those stories! feel your pain!

xo,
R

[PVUgrad]

Funny how they say that blood is thicker than water....that is until you get sick. My husband asked his sister to be tested. She agreed. But then when she found out she would have to lose about 75lbs for the operation, well she chose her food over her brother. 

So his family is out of his life and its just us, me and him. And you know what, we made it, and so can you and your boyfriend!

Hang in there.
PVUgrad