The most challenging part of transplant process - family

[Deanne]

I think my family will be the most challenging part of getting through the transplant process. I'm not worried about the surgery. I'm a little worried about the meds - I had a rough time on prednisone in the past. It's all overshadowed by the idea of spending the rest of my life in prison after doing bad things to my mom (kidding.... sort of). I might just be overly sensitive. I acknowledge that, but it doesn't change anything.

I have a weekend check-in phone call with my parents. I like talking to my dad, but sometimes I don't want to talk to my mom. I feel like she's grilling me every weekend. A couple of weeks ago, she was grilling me about when I was going to be transplanted. She wants to know in advance when the right person is planning to die so she can make travel plans. I didn't give her the answers she wanted (a date), so she got my sister to email me to see if she could get a different answer.  Now I feel a bit betrayed by my sister. 

My mom says she wants to come out to help me after surgery. While she's helping me with laundry and cooking, her help will be liberally dashed with "suggestions" to turn my life into something a bit more acceptible to her. She's acknowledged to me herself that she thinks manipulation is sometimes the way to achieve her goals and I think she'll figure that since I've just had surgery, it should be pretty easy to make me do what she wants me to do. I don't think she can manipulate me that easily. The normal patter isn that she tries to change my life into something she thinks is more acceptible to her. I get mad at her for her attempts at manipulation. She gets mad at me for not being manipulated. Standoff. Over and over and over again. Now add prednisone into the mix....

I'm watching the clocks ticking. My parents are 80-ish. I know I'll miss them when they're gone, but I don't know how to handle them through surgery. Telling them not to come would be very hurtful for them. I don't know if they'd be helpful or just cause additional stress after surgery.

[jeannea]

Wow. That is so tough. Do you have anyone else to help you after surgery? Then you could be polite but firm. "thanks for offering Mom but Mary is helping and I am fine." it's hard to do but could help you in the end. I'm sorry your sister is being a pain too but she probably just wanted to do whatever so she would be left alone.

And I'm still a little confused how you would know when your transplant is. Is she planning on offing someone?

[cassandra]

maybe your mum can manipulate your sister into donating one?

[willowtreewren]

maybe your mum can manipulate your sister into donating one?

What a great response! And perhaps you could suggest THAT?!?!

 

Really, though, my mother was the queen of manipulation. It drove me crazy. She died 11 years ago, and I still miss her, though. About 5 years before she died I had knee surgery. Having her here afterward "to help" was a bit trying for both of us. I do understand your dilemma. And there is no easy answer.

Aleta

[Deanne]

And I'm still a little confused how you would know when your transplant is. Is she planning on offing someone?

 

I don't think there are any plans in the works to off anyone.

Mom didn't like my answer when I said I have no idea when my transplant will take place. My impression is that she thinks I was lying to her. She used my niece as an example of how I must by lying. My niece passed away from liver failure a year ago. Mom said that since we knew a week or more before Kristine passed away that she wasn't going to make it, then I should also know in advance when a kidney will be available to me. Never mind that since my niece died from liver failure and her kidneys shut down about a week before her death, her organs weren't usable. I guess that isn't a relevant fact.

I have friends & neighbors who'll help me after surgery, but I think if I tell my parents not to come, it wouldn't go over very well. I'll have to put some more thought into it. It'd sure be easier if they were either a lot younger (so I'd feel they might be helpful if they came out) or a bit older (In a few years they probably won't be able to travel and it won't be an issue).

LOL on "maybe your mum can manipulte your sister." Thanks for the suggestion. My sisters both offered to donate. One sister was rejected over the phone. My other sister made it partway through the tests and was told to lose 20 pounds and they'd reconsider her. She's lost 10 pounds. She says she still wants to donate, but I doubt it'll happen. That's a whole 'nuther story. I can try to redirect Mom over to my sister. Thanks for the idea!

[MooseMom]

To be honest, I am not sure any transplant center would consider your elderly parents to be the kind of "support network" they'd like for you to have in place.  We've all read so many posts from IHD members who can't get on the list or can't do home hemo because they don't have the "proper support", so I am wondering if you could tell your parents that your transplant center isn't happy with the idea of you having them as your support and that they'd prefer it if you had, well, younger and fitter people close by.  I don't know how you'd gently put that, but there is a kernel of truth to it (or maybe even more than a kernel).

Transplant centers don't care too much about whether or not your house and your clothes are tidy post-surgery, but they DO care if you don't have reliable transportation to get you to and from the many post-op tests; will your parents be able to drive you to the tx center several times a week and sit there with you while you get blood drawn, etc, and then drive you home?  Really, on a practical note, how helpful will they really be?

Could you suggest that perhaps they should instead go and help your sister post-surgery?

How likely is it REALLY, do you think, that your sister will donate?  What does your gut tell you?

No one recovering from something like transplant surgery should be put in a position where they have the extra burden of fending off manipulative relatives.

Frankly, if a relative of mine couldn't wrap her head around the idea that you can't plan the date for a cadaveric kidney, I wouldn't trust her to be of much use post-surgery, kwim? 

Seriously, I'd let the tx center take the "blame" for this one.  Find some way to tell your parents that the tx center thinks they are unsuitable to be post-tx caregivers.  I don't think you'd be wrong, actually.

[Deanne]

Thanks MM. I always appreciate your wisdom. You've given me some things to think about, as always.

I listed local friends and neighbors as my support network, so I don't have any worries about my transplant center having issues with my parents listed as necessary support. I think my mom just wants to be needed. We're very disimilar in our likes, dislikes, and interests. If I hate something, I can be sure it'd be a good gift for my mom. Anything I like, I can be sure she'll criticize. Her idea of "helping" often seem to be trying to make me like the things that she likes. I don't know how to reconcile this with her need to be needed when every fiber of my being rejects 90% of her "help."

I'm assuming my sister is not going to be a donor. Even if she loses the weight, she's still at the beginning of the testing process and there are many more places for her to fail in the process. I've always questioned whether she'd pass the social/psychiatric tests. If she is approved as a donor, then she'd likely be in my house through it all, too, in addition to my parents. I think my sister was diagnosed with bipolar disorder. Whatever she has, she gets rather excitable and loud, especially when things are out of her normal routine, and I suspect think surgery is a bit out of her normal routine, not to mention the fact that it'll be a couple thousand miles away from home in a strange city for her.

I'll be the cranky one torn between hiding under the blankets, poking my head out only occasionally to yell at everyone, and making sure everything in my life and home still where it's supposed to be.

You're right, MM. My best option is to find a way to convince them that they should stay in Minnesota. I want to do it without hurting their feelings though. I'll give your idea about "blaming" the transplant center some thought.

[Brightsky69]

Deanne - Been there! I sympathize with you. My mom about drove me crazy before my 2nd transplant and after. I would not let her stay at the hospital. I told her “you need to go home and get some sleep!” She was on the verge of tears….I am guessing because she wasn’t going to get to be the center of attention. She eats up the “sympathy” she gets from having a daughter so “deathly ill”.

I know you don’t want to hurt your parent’s feelings but you should be able to recuperate in a nice relaxed drama free environment. Try to explain that you have plenty of help at home and they really don’t need to come and stay with you. Promise to call them every day once you get home from the hospital…whatever it takes.   

[MooseMom]

I don't want to advocate lying to your parents, but my god, Deanne....imagine the nightmare of having your sister and your mother in your house with you while you are trying to rebound from surgery!  A well-placed, well-intentioned fib may be the difference between sanity and murder.  LOL!

It's good that you have other support in place and don't need your mom.  Now we have to think about how to, um, manipulate things so that there are no ill feelings.

Hey, do you think it would be an idea to tell all of this to your tx coordinator and ask him/her for something plausible to tell your mom?  You can't be the first patient to be in this sort of position.

My husband's mother sounds something like your and Brightsky's moms...having this need for everything to be about them.  No no no...we just can't allow this to happen to you.  I'm convinced that between you, your coordinator and the rest of us on IHD, we can come up with a way to convince them to stay in Minnesota.  The trick will be to find a way to make your mom still feel needed.  Maybe something along the lines of "Mom, when I get the call, things will happen quickly, and my local friends and neighbors will already be on hand to help when I get home.  But they won't be able to keep pitching in for weeks on end, so it will be the third and fourth week post-surgery when I will need the next batch of help, ie, you."  And then keep putting her off because by the third or fourth week, you probably won't need the amount of support you'll require on day one, and the end result may be that you never need her at all (but don't tell her that!  haha!).

I'm sorry...I forget.  For how long have you been on the list, and how long is your current wait time, approximately?

Don't you worry...we're going to sort this out.  We can't have you recovering with this sort of drama in your house.  We're all going to band together and figure out a devious, dastardly plan!