Family Not Very Supportive

[Dragonfly]

Hello, I am writing to get some things off my chest, because I feel I can do that here. My family just don't understand this whole thing nor do they try to. Sometimes they get nice and ask about what's going on, but to explain to them is very hard, because they just don't have the knowledge. I have been sick for almost two years and they really don't know what it is all about. They think, oh she goes to dialysis (they don't even remember my days) and she has kidney problems and she needs a kidney. They don't know what I go through and how much I need them. I have one sister, she has four children and nine grandchildren and I have one child. I have no parents or grandparents. They are my only support besides my best friend, who is more like a sister than my own sister. When I first got diagnosed everyone jumped and said I will be tested and donate, since then just about all of them backed out except my friend. I get so upset and depressed when I think about how my family treats me. However my daughter is the best, sixteen years old and helps me, she is great. My family is so crazy, they think I am mad at them because they won't donate, but I understand, they just shouldn't have said anything before they were sure. Get my hopes up just to kick me back down after all I have been through. My daughter wants to donate, but I am not sure how I feel about that. Also my family thinks I brought this upon myself, they think I caused my Lupus and kidney failure. The dr has even told them it is not my fault, but every now and then they say if you went  to the drs. But I did I tell them and what do they say, they say you went to the wrong ones. How am I suppose to know I needed a kidney specialist, how do I even find out what's wrong with me unless my primary runs tests? To live with all this bottled up these past few years has been awful and to try to explain all the time is aggravating. Why are they like this? Why can't they get it through their heads? I don't understand, does anyone? OK I feel a little better now, thanks for letting me rant.

[willowtreewren]

Norma,

I'm so sorry that your family is not more supportive. A far as their backing out on donating, it is easy to just say, yeah, I'll do it, but harder when the reality of what it entails sets in.

We had a friend say she would donate to Carl. then she went for her initial consultation and realized that she just couldn't go through with the procedure. I assured her that even thinking about donating was a gift. We are still friends. Another potential donor backed out when the process took so long as his window of opportunity was closing, and his doctor warned him about potential difficulties down the road.

When I tried to donate (I was first in line), I have to admit that in some ways I breathed a sigh of relief at being rejected (although any kind of rejection is not fun for the ego!). I really, really dislike surgery. I've had 6 major surgeries in my life and I did not relish the idea of another one!

Your daughter is still too young to donate. If she is still interested when she gets old enough, they will screen her carefully. This will be a good way for her to find out if she has any of the same kidney related issues that you have. Our daughter was found to have the same problem as her dad (PKD) so she was never a candidate for donation.

It isn't the same, but the folks here on IHD really do get what you are going through. Let us be your surrogate family!

 

Aleta

[Pam]

Dragonfly.....I kniw how you feel.. My family just doesn't get it either. The sad thing for me is a sister and a niece are RNs and 3 others work in hospitals. I have a sister who sent her blood in and was a match, 2 weeks later she packed up and moved 1000 miles away to be closer to her daughter. My daughter was tested but not a match. we decided to go with the paired donor program but she is having issues with her pap so for now that is on hold.

I have 4 sisters in law that are type 2 diabetic. I've been type 1 for 30 yrs. I told them to excersise, lose wight and eat right or they would be in the same place I am. Well 2 of them will not even speak to me.

I don't have any advise to give. Find some support wherever you can. Thanks to the computer you're not alone in any of this.

Pam

[MooseMom]

A lot of people have this problem with their family.  It is impossible to know what it is like to live with kidney failure unless you've been there, just like it is impossible for you to REALLY understand living with, say, autism or cancer or any manner of things.  So, try not to be too hard on people just because they don't "understand".  You have us to "understand".  You have your family for love and support.  Just because you may not know what it is like to have cancer doesn't mean that you can't support a cancer patient with simple compassion and some practical help.

The whole donation thing really puts a spanner in the works; it makes an emotionally difficult road that much rockier.  I understand your resentment/disappointment in your family for not even getting tested; we've all experienced that kind of situation.  I don't know how to solve that.  I don't know if it is appropriate for you to say to someone, "I remember you offering to donate.  Would you be willing to just get tested?"  That's a perfectly reasonable request as long as it is done with care and without the application of any pressure, but it does take some courage to be that upfront, and the risk of disappointment is truly great.  You have to be prepared to witness the other person's extreme discomfort.  Saying "no" is hard.  But it is your life at stake, and these are people who profess to love you, so if you cannot gently ask THEM, who CAN you ask?  Only you can decide if you want to take those risks.  There is no right or wrong answer to this.

We all, also, know what it feels like to feel unsupported.  I've thought about this alot in my years with CKD.  The first thing you can do is sit down and make a list of exactly what you want/expect from your family.  Do you want practical help, ie help with household chores?  Or do you just want someone to talk to, to hold your hand through all of this?  Once you know what you need, then you can set about getting it.

No one is born knowing about kidney disease.  It is not fair to expect people to spend their time learning about your ailment, although it would be evidence of love if they did.  You may have to just sit them down and tell them.  There are all sorts of leaflets and pamphlets and educational materials that you can give them.  Take this opportunity to teach them!  They won't know, otherwise.

If they don't know what you go through and how much you need them, you might just have to tell them.  It would be nice if they took the time to find these things out themselves, but it doesn't seem like that's the case, so if you really really really want them to know, tell them.  That way you KNOW they know.  If they STILL are unsupportive, then they are selfish people who lack a modicum of compassion.   That's when you tell yourself, "It's THEIR failing, not mine," and you try to work through your disappointment.

I always hate stories like this.  It makes me really sad to hear about the selfishness and disregard that people have for one another.  I am so sorry.   

[needlephobic]

I know the feeling. my bros and sis don't get it. When my mom passed away last Nov  asked my sis where or what is going to happen to me can't pay full rent and  been living in mom's house cause of ckd. Was told by sis you stay put we need to take care of you  thought cool NOT. Was told by sis a week before christmas we are selling the house and  need to pack my stuff and get out like where the street. Was rushed to hospital from the d center with a heart rate of 225 beats a min they called my bro 3 times his excuss was didn't know I was supposed to go to the hospital he is the contact person. My bro's girlgriend will start crap with me and when I defend myself she will run and tell my bro and all he wants to do is beat me up a disabled sick person. My sis comes by everyday ands talks to my bro and his girlfriend but never talks or sticks her head in my room to see how I am doing. I got real loving support here Not. I am a lone wolf that is why  took up the offer to be NPR at my unit don't want another person to go though this.

[CHeatherS]

Well dear, I will just add my nodding head and listening heart to the others here.  I know exactly what you are saying.  I don't know, I suppose that this society has just become so shallow that people don't want to put out the effort to understand.  But I have had to come to the conclusion that "it really is what it is".  From there you can go on to figure out what attitude you choose about it all, and how you can work with what you have.  But waiting, and expecting things from people who are clueless, is only setting up for disappointment.  There are some that you will find who care and understand, but not many.  You have to just accept that. 

I had a lot of people mouth off about "oh I would give you a kidney"..... but then nothing.  Nothing at all. But one person that I only knew from an internet forum not only said she wanted to, but she took the bull by the horn and found out what it took, contacted the kidney transplant center and went for it, even to the point of having to lose some weight. 

All it takes is one person to come along side of you.  And then, remember, in the future, because we KNOW what it's like to feel abandoned, we can care for others, with understanding.  We won't be shallow. 

Keep us posted here, we care and we can hear your heart, we have been there. 

Much love
Heather

[Cordelia]

Rejection is the hardest thing!!! I totally understand what you're going through!!!!         

I've been what you're going through, I very much understand.   

[Dragonfly]

I just want to thank everyone for their replies and help. I feel good when I come here and I know my internet family is here with comfort , understanding and care. Thanks everyone.

[Cordelia]

      to you!!