Family and ESRD

[pitagory]

I have a question I have been on dialysis since January of this year and ever since then my imitate family I think is having a hard time with this and don't know how to act when I am there every time we get together witch seems less and less times I feel left out of conversations some times I don't even get an invitation any more its like they are scared that they are going to say the wrong thing or something like that.  I want to tell them that I can still talk, think, eat ,drink just not as much as I use to.But I am still here not gone yet. sorry guys I just feel so left out maybe its just me. 

[willowtreewren]

Your family may just need you to educate them more about what you are going through and what it means for you.

Unless folks understand what dialysis is all about they really have no clue.

In the mean time.....   

Aleta

[MooseMom]

Perhaps you could do the organizing.  Maybe you could invite your family over for a games night or a meal, or if that's too much trouble, why not organize a get together at a local restaurant?  This will show them that you are not dead.

They don't know what to say around you because they don't understand the trauma of this disease and its treatments.  They probably love you and want to protect you, and they don't want to hurt you or risk saying the wrong thing.

They do not know the "right" thing to say because you have not given your permission for saying anything at all.  I suspect they are looking to you to provide cues.  If they see that you are OK and are happy, then they will relax and might feel more comfortable asking the questions they've feared asking.

You can't expect people to magically know what's going on in your head.  Sometimes we have to be the ones to provide the emotional education.  I know I've seen people do the "if I have to tell you how I feel, then you just don't care enough" sort of thing.

If you are struggling with ESRD and dialysis, and if you need their support, tell them.  Have mercy and don't expect them to guess what you need/want.  Maybe the first thing you could do is to decide what it is exactly that you want from them.  How can they help you?  Do you need some practical help around the house?  If so, how are they supposed to know if you don't tell them?  Do you need someone to talk to, a shoulder to cry on?  If so, tell them this. 

Give them the opportunity to understand.  It would be great if everyone could know exactly the right thing to say and do all the time, but that's just not realistic, and to get what you want or what you need, more often than not, you have to be a bit more specific.

You have no doubt found that all chronically ill people need to be their own best advocates.  This is true not only with doctors and clinic staff, but it also holds true with more personal relationships.  Figure out what you need and want from your family, and then work to get it.  Don't let yourself be left out of anything.  Don't make it their responsibility to include you.  Include yourself.

   I'm sure your family loves you.  If you love them, tell them what you think they need to know.

[ToddB0130]

I agree.  They're probably afraid to say the wrong thing or to bring up something that they know is hard to deal with.   When you're in a group setting  talk about it more yourself ("While I was at dialysis today..." or "I had a really good treatment today.  I'm feeling really good.") .... and if people seem uncomfortable,  ask them if they have any questions they'd like you to answer for them.  Also,  if your center allows you to bring a guest or visitor (I was able to go with my brother to all of his lung cancer related chemo treatments),  ask if any of them would like to see what it's all about.  I think there is some fear there and as Moosemom writes,  you can control it by being more active in those types of situations.  Don't let yourself NOT be engaged with them in those situations.  Explain how helpful their support is to you.

[pitagory]

Thanks everyone for all the advice I have organized a small get together for my family, and I am going to talk about ME something I have a hard time doing.  I am tired of being depressed and action like I am OK when I am not. I know they love me that I have no doubt. Sometimes you think  because they love me they must know how I feel. if  I had to put myself in there shoes  I would  probably do they same thing. Some times because we love them we want to ignore that  their is a problem because we want  everything to be OK and if we don't act like something is wrong then it isn't.
I love my family very much and I know at the end of  it they are the ones who will be their for me. 

[MooseMom]

I think you will feel a lot better once you have an honest talk to them.  If you are pretending that all is OK when it is not, then they have no way of knowing the truth.  Not only that, but it is really hard to keep up a facade for so long; you must be exhausted.  I think they will be very grateful for your honesty, so good for you.  It's not hard to have this sort of conversation, but faking it for such a long time is much, much harder.

Let us know what you tell them and how they react.  I'm sure they will surround you with a lot of love.

[lmunchkin]

It could very well be that they just don't know about this disease and you should help them to understand it a little better!  I believe once you do that, you will see more receptive responses!

Good luck,

lmunchkin