I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: eboli on January 24, 2014, 07:22:17 AM

Title: How much bad news should I share with my kids?
Post by: eboli on January 24, 2014, 07:22:17 AM

I am having a hard time deciding how much information to share about my impending HD, especially with my 13 and 14 yr old kids, who up to now have no awareness of my CKD.  It always seemed that dealing with my other serious chronic health problems in the last six years was more than enough (chronic anemia, chronic heart failure, insulin dependent Type II diabetes, losing ability to walk unaided, surgeries, hospitalizations, you get the picture).  I have changed their lives so much already, the guilt is incredible!  I am having my fistula surgery in a few days, but do not know how soon I'll have to start HD (my kidney function is less than 15%) and I am experiencing most of the other effects.  Fatigue, frequent cramping, spaced out,  just too sick to be much of the Mom they deserve.  My husband is supportive, but comes from a culture that keeps bad news away from the very old and the very young.  I also get the well meaning, but irksome, advice to pray harder, longer, and I'll be physically healed!  What am I supposed to say, when I don't want to say anything??? Any insight would be appreciated....   

Title: Re: How much bad news should I share with my kids?
Post by: obsidianom on January 24, 2014, 07:44:57 AM

First off I think you need to push to get dialysis strarted sooner. (like now) If you are experiencing all those effects it is time. That alone will help as you will feel better and be better able to deal with your kids. I am not a parent so I dont give parenting advice but they will obviously know anyway as you cant really hide dialysis. Teenagers may be self centered but they know what is up and will figure it out anyway.
The people telling you to pray harder to get better are not doing you any favors. That just creates guilt for not praying enough when things go bad. They are putting their own agendas on you. Not very nice on their part.
Get the fistula surgery and then a catheter put in to tide you over so you can start dialysis soon and not wait months for the fistula to mature. Also you will heal better if you are on dialyisis as the toxins and fluids will be controlled.    Best wishes.

Title: Re: How much bad news should I share with my kids?
Post by: MooseMom on January 24, 2014, 09:11:13 AM

Thirteen and fourteen old teens are not "the very young", so I don't see the point of shielding them as if they were babes in arms.

Dialysis will impact them more than the treatments for your other health issues, and it is not fair to keep them clueless.  If you do dialysis in a clinic, then you will be gone for up to four hours three days a week, and I would think that your absence from the house requires some sort of explanation.  If you dialyze at home, they're going to see lots of medical supplies lying around, and I'm sure they are smart enough to suss out that something is going on.

Prepare them now as much as you can.  Now is a good time since you will be having to prepare yourself for dialysis in a few days with your fistula surgery. 

Good luck!

Title: Re: How much bad news should I share with my kids?
Post by: eboli on January 24, 2014, 12:22:39 PM

Thank you for giving me your honest opinions on my post.  I am realizing that I need to follow my inner voice and not give in to the panic.  All considered, I am blessed to have a husband who is also an awesome father, and you're right, my boys are not babies anymore.  I'm going to talk to them with my husband tonight.
As for the treatment, I have an incredible nephrologist who has saved my life at least twice, and he says it's time to move ahead quickly.  I visited the HD center this morning, met one of the nurses and was able to ask a lot of questions.  I feel so much better knowing where I'll be going and what their set up is.  Still bummed about the fistula though, and tired of surgical scars (they're just plain ugly).  Hoping to feel better soon.
By the way, I love what you say about your wife!  It's something to aspire to feeling for your partner in life... Thanks and blessings to you 

Title: Re: How much bad news should I share with my kids?
Post by: MooseMom on January 24, 2014, 01:25:37 PM

Oh, and as far as what to say to people who tell you to pray harder so that you will be physically healed, there are several options:

1.  Say nothing, but look at them as if they're clueless, which they are.

2.  Smile beatifically and say, "Thank you!"

3.  Smile beatifically and say, "I pray that God will give me the strength to deal with the latest life challenge that He has bestowed upon me."

4.  Smile beatifically and say, "I pray that God will find me a living kidney donor."

5.  Say nothing and ignore them.

As for your boys, my bet is that if you present the information to them in the right way, they will be flattered that you believe they are mature enough to handle it.

Title: Re: How much bad news should I share with my kids?
Post by: ToddB0130 on January 24, 2014, 05:04:35 PM

I agree that dialysis is 'a biggie' and you're not really going to be able to 'shield' anyone living in your household from it.  You will be tired and will need time to adjust.

I totally understand not wanting to 'reveal' to many people.  I kept the information from my family (siblings, in-laws, etc) until about 10 months before I started.  I kept it from my peer group at work for about 6 months before I started ...... I didn't want to be viewed as 'weak' or be 'pitied'.

What I found when I 'told' was that people were mostly concerned, empathetic and supportive.  No one really said or did anything I was insulted or angry about.  But everyone has to go at their own pace.

The biggest reveal was when I had my transplant and needed to reveal to about 75 co-workers 'the whole truth' ....... 90 % had no idea I had been working full time and doing three nights of dialysis (6 hour shifts) and then that I had received a kidney transplant and would be out of the office for a couple months (I am in a position where I interact with everyone as a support person)..   Again I was overwhelmed by the people who made meals for me, gave me rides, did shopping for me, etc while I recuperated.

I haven't had any real 'bad' things happen since I talked to people.  It was mostly in my own head.

Good luck to you in your discussion with your kids.  They seem to be able to cope with the other issues that you deal with.  Once you start dialysis,  they may see your health 'improving' a bit more from getting the treatment to remove those 'poisons' and to help reduce extra fluid build up.

Title: Re: How much bad news should I share with my kids?
Post by: Angiepkd on January 24, 2014, 10:48:35 PM

My boys are a bit older than yours (24 and 21), but I have always tried to put on a happy face and not make a big deal of my kidney problems. I think the main reason I wanted to keep things from them was out of guilt. I have hereditary Polycystic kidney disease.  My oldest son has it and my younger son has a 50/50 chance of having it. They always knew about my kidney disease, but it wasn't until my kidneys failed and I started D that they truly realized how serious it was. I didn't want them to see me going through everything and think "this will be me in 20 years". That is what I remember thinking when I saw my dad on D. It sounds like your boys have already seen you go through a lot, so they are probably able to handle anything you share with them. I would keep the explanation simple and tell them you might feel better after you start D. It's a tough situation, but kids are incredibly resilient. And it helps that you have a supportive husband. They will be fine if you show them that you are fine.  And don't be so hard on yourself!  You sound like a great mom, and you certainly can't help your medical problems. Some of my best talks with my boys happened while I was hooked up to that dreaded machine. I hope everything goes well for you and you feel better soon!

Title: Re: How much bad news should I share with my kids?
Post by: eboli on January 25, 2014, 01:04:13 PM

Wow...talked to my boys last night, started out with just the facts of the fistula procedure and asked if they had questions. NO QUESTIONS! It was  "OK Mom" so I was surprised.  This morning, I got the longest hug from my 14 yr old that I've had since he was 10.  The younger one is quiet.
As for the "pray to heal" stuff, I realize that it is a coping mechanism, especially in some cultures where from an early age the concept of "power prayer" is ingrained.  That is not my background, so I am often looking at it skeptically ('cause I'M STILL SICK!!) I wish I could believe it, it would chase my blues away.. but there were some replies suggested that I'll use next time.  As for the guilt, I would like to hear how people work with it when they are chronically ill.