hey again and feelings of shame and guilt and recentment all in one

[bluesgirl]

hey everybody! 
I used to hang here in the begining of my dialysis journey. I haven't been on because life has been very busy.
I now handle a lot of the aspects of my D by myself. I dress the maschine, I use buttonhole. One fo the few issues I have now a  days when my when she's arounds and, I fell halts my progress. When she's not around though, things usually flow a bit easier.)
They have also figured out now what was wrong with my kidneys, and why I had horrible bouts of fever up to 3 times a week. I had infection in my shunt ( tube that leets water from the brain and down to, in my case, my heart.) That's also what caused my kidneys to eventually fail, because the doctor who was supposed to have a look at it just looked at me and said that that wasn't the problem    so essentially, I could have been fine if it had been caught in time (   :rant;which it had been, had he done his effing job! )

But anyways, today I have been to the transplant evaluation team för the first time. I have had answers to some of the questions that were giving my anxiety, but some are still unanswered.
I  also got the tricky question today, do I have any one that might donate a kidney? The answer is probably no. Even though my mom is alive and my sister is alive mom says she doesn't really want to and she doesn't want me to even ask my sister.
I'm ashamed of it, but I can't help but feel unloved and a bit dissapointed and almost recentful of moms attitude  . She says she's too tired to go though an operation right now, but I'm very tired too of being in dialysis three times a week and live with that worry and knowing that I will have to do it all over again ( I'm just 32) even if I do get a living- donor kidney, and probably all the sooner if I get one from a diseased donor. She seems to want to refuse to see that. At the beginning she once said "what's so bad about dialysis? You lay in a bed for a few hours, get served tea and sandwiches and that's that." Now that I've talked to her a bit about it she at least doesn't say stuff like that, but she still seems to live in that rosy little bubble that it's not all that bad, and "I sound so much healthier" and seems to think everything is solved now that I don't have the fevers anymore. Of course things are easier when I don't have fevers  times a week and lay shaking in bed for 6 hours, but that dosent' mean that everything is swell and dandy in my life now.
One of the issues though is I'm not sure what she would be like if I got one of her kidneys. She is very overbaring and nagging as it is, and maybe she would constantly act like I really owe her ( which of course I would, but it's hard hearing all the time that you should do as someone says all the time because you owe them, like they have a hold on you.)
I'm also tired of feeling ashamed when the transplant team and docs ask me about someone wanting to donate and their reaction when they hear mom doesn't want to. It's not my fault she doesn't want to! I don't like having to sit and explain her reasons when I feel dissapointed with them. I told her today the reason I ask is that they asked, but I'm not sure she cared about that.

Oh well, this turned out to be a long post about something completely different than I set out for it to be but I need someone who can understand that feeling of wanting something so badly, but feeling ashamed of feeling you want it and that you even ask for it.
it doesn't help that my meeting with my counsellar is at least a week away as well...
It's good to be back though, among people who hopefully understand the whole mix of guilt and shame and embarrasment and hope and hopelesssnes and worry and bitterness with the docs that didn't catch this in time all the other stuff you feel facing this disease and it's consequenses, so HI! 

And of course now comes all the gulit and doubt about talking to my mother about this earlier... Not a good night, it would seem 

[adairpete]

Hi bluesgirl, I want to give you a virtual hug!  It's sounds like a lot to deal with right now!  I'm sorry about your mom's reluctance to donate, but it mgiht be a good thing if she would attach strings to her gift afterward.  Also, it sounds like she might be in denial of how sick and stressed you really are.  It could be just a defense mechanism she's putting up.  She may come around and change her attitude.  I have a family member like that.  He was going to donate, but never followed through on any of the work-up that the transplant center requested and I eventually just had to stick with pursuing a cadavear donor. 
I would go ahead and ask your sister, regardless of what your mom thinks.  You need to focus on you and your needs right now!  If you don't have a living donor, have you considered doing home dialysis like PD?  I hated the in-center hemo and have been doing PD for 19 months and felt like I got my life back after being tied to that chair.  I would highly reccomend that, if you are able. 
Hope you feel better and feel free to rant and rave on here as that's what it's here for! 

Carolyn

[bluesgirl]

thank you so much for your reply. I'm having a really bad and angst- ridden night and so any reply helps.
Unfortunately I have had many operations in my stomach and was told earlier that I have adhesions in my abdomin and can't have PD.
At first, before I went on D my mom said "let's talk about getting a transplant later, when your kidneys fail completely happens, it might not happen and if so not for a very long time." Then she didn't want to donate because she was scared and now it's because she's had to deal with me and my dad both being sick. I understand all that and I love her a lot, but I can't shake the feeling of feeling like I'm not worth her kidney and the feeling of being unloved (that also comes from being the difficult daughter with both kidney disease and a dissablility who she sees as needing a lot of help and feeling that my sister, who she doesn't want me to even ask, she was very quick to say "not NN!" when I said that the docs had suggested that they both go talk to a transplant doc, is the golden, perfect one who is very good and lives at home, and not 600 kilometers away like me, and studies ( which I would do if I could but can't being on D) and doesn't need any help and doesn't have 7 cats and a bird that is "horrible and clearly isn't right in the head" ( he screams when he doesn't get attention) And also feeling how much I want to get back to my normal life and not have to go Back on D for a long time, instead of a trasplant lasting for maybe 5 years or so and then being back on the same path. At the same time I don't want to have to owe my mum anything because our relationsship is complicated enough as it is and of course I don't want anything to happen to her since I love her a lot, so it's all a double-edged sword and I'm so confused and tired of it all.
Long and confused post again, but that's really how I feel right now.

P.S what an increadibly cute Dachshound!

[MooseMom]

Listen, if you have a mother who can't be arsed to even offer to test for donation and who cannot see what's so bad about dialysis, then the problem is most definitely in her own mind, not in yours.

I understand that people who have bad mothers often feel scarred for the rest of their lives in some way or another.  My husband's mother is batshit crazy, and I've seen the effect it has had on his self-image.  It must have been even harder for him when he was your age.

Let's face it; some parents are just not very good people, and their children all too often end up thinking, "There must be something wrong with me for my mother to treat me like this."  That's the legacy of bad parenting.

There is not much you can do to change your mother in a fundamental way, but it's good that you have recognized that her very presence is toxic.  It is not easy to just ignore your own mother, but you have to find a way to innoculate yourself against her infective affects upon you.

It is easy for your doctors to wonder why your mother won't donate, but then again, they haven't met your mother.  If they were to meet her, I'd bet you that the social worker would have grave doubts about her donating and the psychological consequences.  There is a reason that both donor and recipient go through psychological testing/inquiry.

If you were to tell the transplant social worker that you'd feel like you'd "owe" your mother and that, furthermore, your mother wouldn't disabuse you of that notion, I'm not sure the tx social worker would allow your mother to donate.  It's the tx social worker's job to keep that sort of emotional manipulation from happening.

You don't owe the docs any explanations as to why your mother doesn't want to donate.  Or you could simply tell them that you don't want her to donate because you don't think she could psychologically cope, which would be true, and they can't argue with that.  There is no reason to feel shame because this has nothing to do with you.  It has everything to do with your mother, though, and again, any mother who would be so dismissive of her child's suffering is an immoral bitch.

You know exactly what she'd be like if she gave you one of her kidneys.

[lmunchkin]

Sending prayers &    to you Bluesgirl. Hope things improve for you as it really must be hard!
Did I hear correctly, that your father is sick too?  What is his illness, not to be noisy.

You could try doing Hemo at Home with NxStage.  There are alot of people here doing it and very well at that!

God Bless,
lmunchkin

[bluesgirl]

he got cancer a few months before I got diagnosed with kidney disease and then got heart issues and a stroke and aphasia during an operation for his cancer. Now the lastest  bit is that the cancer has spreak to his lungs, but seems not to grow very fast and the tumours are still very small.

Sending prayers &    to you Bluesgirl. Hope things improve for you as it really must be hard!
Did I hear correctly, that your father is sick too?  What is his illness, not to be noisy.

You could try doing Hemo at Home with NxStage.  There are alot of people here doing it and very well at that!

God Bless,
lmunchkin

[bluesgirl]

Listen, if you have a mother who can't be arsed to even offer to test for donation and who cannot see what's so bad about dialysis, then the problem is most definitely in her own mind, not in yours.

I understand that people who have bad mothers often feel scarred for the rest of their lives in some way or another.  My husband's mother is batshit crazy, and I've seen the effect it has had on his self-image.  It must have been even harder for him when he was your age.

Let's face it; some parents are just not very good people, and their children all too often end up thinking, "There must be something wrong with me for my mother to treat me like this."  That's the legacy of bad parenting.

There is not much you can do to change your mother in a fundamental way, but it's good that you have recognized that her very presence is toxic.  It is not easy to just ignore your own mother, but you have to find a way to innoculate yourself against her infective affects upon you.

It is easy for your doctors to wonder why your mother won't donate, but then again, they haven't met your mother.  If they were to meet her, I'd bet you that the social worker would have grave doubts about her donating and the psychological consequences.  There is a reason that both donor and recipient go through psychological testing/inquiry.

If you were to tell the transplant social worker that you'd feel like you'd "owe" your mother and that, furthermore, your mother wouldn't disabuse you of that notion, I'm not sure the tx social worker would allow your mother to donate.  It's the tx social worker's job to keep that sort of emotional manipulation from happening.

You don't owe the docs any explanations as to why your mother doesn't want to donate.  Or you could simply tell them that you don't want her to donate because you don't think she could psychologically cope, which would be true, and they can't argue with that.  There is no reason to feel shame because this has nothing to do with you.  It has everything to do with your mother, though, and again, any mother who would be so dismissive of her child's suffering is an immoral bitch.

You know exactly what she'd be like if she gave you one of her kidneys.

Thank you! This does help in some ways, although I love my mother like crazy, I have started to slowly recognise that some of the things she says and does to me simply isn't very nice and that she doesn't seem to have any boundries in how she treats me or what she tells me sometimes. It's so hard though, because, as I've stated a lot I really DO love her an awful lot ( sorry to sound like a broken record, but repeating seems to be the only way fo me to get any clarity into what I feeling and why and to accept it in some way.) but I also DO recent her for a lot of stuff she has said and done and keeps doing, such as portraying my sister as the golden one and constantly nagg me. See, she's good at "helping" me when it comes to telling me that I must remeber to take my meds, that I must do this or that or not do this or that.
A few of her golden gems include:

*Telling me one time in high school that she might as well do something that needed doing because I "obviously won't get 'round to it for ever and if I do it I probably won't do it right."- Later when I said that that comment had hurt me, she didn't remeber saying it, and then told me "well if it hurt that much, I'm sorry!" in an annoyed, not very sorry at all , way.

* the above comment on dialysis.

* when I told her I was sad about having to do dialysis and it beeing so time-consuming she said: "well, you didn't do very much with that time when you had it, though. You mostly spet your time by your computer or watching TV and you can do that just as well in dialysis, can't you?"  (this  and that fist comment about dialysis was said in a way I guess was meant to cheer me up maybe, but it certainly didn't, it just made me feel very alone in the world.)

It's like she thinks the things she says will cheer me up, but they don't at all and then I guess I start feeling guilty for "takeing them the wrong way." (That's also a problem: as soon as I teel her I feel hurt by something she says she says she didn't mean it that way, but you can hear that she lays the blame on me for taking it that way, or sometimes when she nags to much it's "beacuse I have to, because if I don't, you forget to do things.")  She is always right and her feeling are always right and if I feel hurt and upset that's an issue I have.

On the other hand, she does help me a lot ( although I used to often get to hear how tiring it is to go to my place and help me with allt the things I need help with, although she takes it on herself to do it, I never ask her to come up and help. When I tell her this, however, she says "well what would happen if I didn't, things would just fall appart!" I have started to recogninse this though, and try not to take it to heart too much when she does it, and she doesn't say it quite as often as before.) I know she really loves me, because she tells me, and has done a lot for me, but it's hard to always feel guilty.

[amanda100wilson]

When you describe your mother, you could be describing my mum.  Not with the transplant stuff because she did at least get tested, but just in general. I was always compared with my brother, as in 'M is naturally clever and doesn't have to work hard to get good grades, while Amanda has to work really hard to achieve the same thing.'. I've always been told that I lack confidence, I wonder why?  I love my mum too but like your mum, she is psychologically manipulative and self-centered.  With your dad being ill your mun has a lot more on her plate than mine, but if she has always been the same, then it sounds as if it is just an integral part of her personality.  I really don't think that it has anything to do with you and maybe she is projecting her own feelings of inadequacy and fear onto you.  Don't feel guilty about your feelings.

[rocker]

Ha.  It took me many years to realize that my mother is completely self-centered and that nobody matters to her as much as her.

It probably took that long to realize because she constantly told us how much she gave up to devote her life to us, and I believed her!   

- rocker

[MooseMom]

Bluesgirl, you can love your mum yet not like her all that much.  Just because she is your mother doesn't make her a kind, thoughtful and empathetic person.

All my life I have almost always sought to excuse or explain away people's bad behaviour.  My husband teases me endlessly about it.  If we're in the car and someone cuts us off, my husband gets angry but I'll always say something like, "Well, you don't know...maybe that person is in a hurry to pick up his wife at dialysis." 

But for a parent to put his/her own self-absorption above the illness and suffering of his/her child, even an adult child, well, I refuse to explain that away.  There may be a plethora of explanations but there are no excuses.

I'm sure she loves you, and I don't doubt that she has done a lot for you, but the truth is that she has managed to manipulate you into feeling guilty for reasons that I don't entirely understand.  And that is unforgiveable in my world.  You have a life threatening illness yet she manipulates you into feeling this way.

I'd like to tell you that you need to take responsibility for your feelings and stop allowing her to make you feel this way, but when you are ill and have a master manipulator as a parent, it is hard to suddenly harden yourself and train yourself not to fall into this psychological morass.  But do try, OK?  She doesn't have a gun at your head, forcing you to feel guilty.  She can't force you to feel any particular way.

Ideally you'll get to the point where she will say something stupid and you will be able to just file it away and think to yourself, "Well, that's just mom being mom."

You have enough to deal with without taking on guilt as well.  What exactly do you feel guilty about?  Do you know?

[MooseMom]

It's good to be back though, among people who hopefully understand the whole mix of guilt and shame and embarrasment and hope and hopelesssnes and worry and bitterness with the docs that didn't catch this in time all the other stuff you feel facing this disease and it's consequenses, so HI! 

I can't say that I have ever felt guilt or shame or embarrassment because of my illness.  I have felt a whole host of feelings, but not shame or embarrassment.  Could you explain a bit more about why you feel these things?  You don't need these extra burdens.

[Whamo]

You can't expect your mother to donate a kidney to you.  That's too big a demand.  If she wants to help you, fine, well, and dandy, but it is unreasonable to expect her to give you one.  You need to get on social websites and troll for a kidney.  Try your church.  The most generous people on Earth are usually real Christians.  You have to look for the person with the big heart that would like to help you.   Expect a lot of rejection, but remember, you only need one yes.  You are only going to work yourself into a deeper depression by feeling sorry for yourself.  Keep a positive outlook.  The transplant team will like you more.  You can do it. 

[bluesgirl]

You can't expect your mother to donate a kidney to you.  That's too big a demand.  If she wants to help you, fine, well, and dandy, but it is unreasonable to expect her to give you one.  You need to get on social websites and troll for a kidney.  Try your church.  The most generous people on Earth are usually real Christians.  You have to look for the person with the big heart that would like to help you.   Expect a lot of rejection, but remember, you only need one yes.  You are only going to work yourself into a deeper depression by feeling sorry for yourself.  Keep a positive outlook.  The transplant team will like you more.  You can do it.

i don´t really expect her to do it, but I´m sad she won't and I wonder if she might if it was my sister, not me.
I Live in sweden which is a very secularized country and don't go to church. I don´t really feel sorry of myself but I still find things diffucult and I feel a bit rejected.

[bluesgirl]

It's good to be back though, among people who hopefully understand the whole mix of guilt and shame and embarrasment and hope and hopelesssnes and worry and bitterness with the docs that didn't catch this in time all the other stuff you feel facing this disease and it's consequenses, so HI! 

I can't say that I have ever felt guilt or shame or embarrassment because of my illness.  I have felt a whole host of feelings, but not shame or embarrassment.  Could you explain a bit more about why you feel these things?  You don't need these extra burdens.

They all stem from needing more help now with remembering medicine and doctors appointments and manageing docs appointments ( ie cancelling and getting a new time) that my mum helps me with, also I have always have memory issues, like remebering to do things, and they are slightly worse now with the kidney-brain issues. I also had an infection in my body, that caused the kidney to fail which also made me very tired so my mom had to help do certain ohter things as well, that is better now, but the guilt is still there. And then, because I have spina bifida and am in a wheelchair there are certain things that I need help from others doing as well and sometimes my mum will have to do them.

The most difficult prat , though, was that they didn't discover what was causing the disease at first, and so my mum had a teory that since I hadn't been religously meticulous about going to the bathroom every thrid hour ( back then I didn't quite feel when I needed to) when I was younger and up to when I got the kidney faliure, my mom blamed me for ruining them by "not taking care of myself, not going to the bathroom when you're supposed to and sleeping all day and staying up all night" or something of that effect. So for the last year or so, before the actual cause had been discovered, I lived with the shame and guilt of having caused the CKD myself, and being a burden on my mom, and although that has changed a bit, it still lingers.

Speaking of which: another "funny" thing my mom did just after we had discovered the cause, and the docs said that there was a small change of recovery ( still is, I guess but it hasn't happened yet.) was that when I was home for x-mas she would wake me up at 9 o'clock, before she went to work ( and being a night person, I had usually gone to bed somewhere between 3-5 in the morning) and tell me to go to the bathroom. After a few days I asked her what the heck she was doing told her that I had acutlly been up and done that right before I went to bed she said "oh, well I didn't know that, I was asleep by then, I won't do it again." That's good of course, but my issue is with why she would do it at all. Why not let me decide when I need to go to the bathroom?!

[MooseMom]

I'm sorry, but this story just gets worse.  So, let me get this straight...your mother
1.  doesn't think dialysis is really that big of a deal,
2.  won't get tested as a possible donor,
3.  manipulates you into feeling guilty about your health problems, AND
4.  manages to make you feel like you caused your CKD.

What a nasty piece of work.

I can understand your feelings of resentment and anger that the negligence of your medical team caused your kidney problems.  What I can't understand is how your own mother turns that into YOUR fault.

I don't know you and I don't fully understand the extent of your memory problems.  But you are not the only one with memory problems, and with technology today, there are all kinds of strategies and gadgets that will remind you to breathe!  LOL!  Seriously, if you have a computer, which you obviously do, you can use all sorts of calender functions.

I can't help but wonder if your mother is manipulating you into needing her more than you might really need to.  If you need her, then she has a better chance of manipulating you and controlling you.  It might be an idea to try to think of ways that you could be more independent.  I realize that might be more easily said than done, and I DO understand that I don't have extensive knowledge of your unique situation, but if you could do more for yourself, those feelings of guilt might have a chance to subside.

[flanbyjan]

Hi, I am a newbie care giver for my husband.  We just started home dialysis.  For what it's worth I think that you have every right to feel all those things you describe and that you are able to express your feelings and thoughts is excellent for your mental health.  And when it comes down to it, this is happening to you and no one can feel exactly what you are feeling.  Your family members may not be able to donate because they're just not able to do it (mentally, physically, whatever).  And this has nothing to do with you and everything to do with them.  So since you are not responsible for their behavior there is no reason to feel guilt for their actions.  Being disappointed is natural and wishing things were different is completely natural especially given what you've been through and continue to go through.  You are so young, I can't help but think that there is much hope for you in the form of a transplant, or new treatment options on the horizon.  Try to find doctors who are on the leading edge of technology (sometimes easier said than done).  We go to the University of Chicago and I feel that they are the best and most informed docs in our area.  Do they still make mistakes?  yep.
Hang in there and acknowledge everything you feel because it is real, and then figure out how to move forward. That's my two cents.

[lainiepop]

Aww bluesgirl i'm so sorry you're being made to feel this way with everything else u have to cope with, by the person who should support you most! It is not your fault you are ill at all and i would expect a mother to be slightly more compassionate. I have a 4yr old son and 8mth old daughter and i could not stand the thought of them being ill in any way and would do everything in my power to help them. But then people are different i guess.
I would definitely just ask your sister about being a donor anyway, tbh it's nothing to do with your mum if u ask her, its between u and your sister, if your mum doesn't want to donate thats up to her but she can't dictate who you can ask. Are u and your sister close? I have no siblings and my parents are 64 and 66 so when asked who could donate i only had my husband, until the transplant team said my parent's age didn't  matter it was their health. So i just called them and told them they weren't too old to donate and they needed to contact the transplant team themselves (to make sure i wasn't forcing them).  I have to admit even tho im really close to my mum she's the one whos said a few weird things along the way like, dont get your hopes up we might not match or be healthy enough and altho she didn't say anything i got the feeling she was doing it because i was her daughter and almost felt like she should (she had me when she was 35 which 30 yrs ago was fairly old and think she always felt guilt that i was born with all my problems), rather than wanting to. Maybe thats not the right words, does anyone WANT to have a kidney taken out? Probably not, i know i wouldnt but i would for my kids (if i had 2, at the mo 1 working more than 8% would be gratfeully received ) On the otherhand my dad who hates hospitals and needles was more matter of fact, i need it, it has to be done, simple. Altho i think in his mind he thought mum would do it as she's better bout hospital things, but he came back a slightly better match so we're going with him and his health tests are fine, so my mum will look after the kids with hubby when i have the op. And so that was that, tbh once i knew they were not too old to donate, i didn't really ask, just told them what doc had said, and yes, i did expect them to donate and i think i would feel as u describe, pretty resentful if they hadn't. Maybe not right but as a mother in my mind it wouldnt be a question, and as for not asking your sister i don't get that either, if one of mine needed it i would be encouraging the other to do it.
Could u maybe take your mum to an appointment or dialysis session, give her a bit of a reality check. I really hope u can get on better terms about it, and def do ask your sister, thinking of you  Marie x