Dilemma with questions from son

[Katey]

I am back on hemo from having a transplant 9 yrs ago.  My son is now 18 and previously when i was on dialysis he was only 9.  Now that he is legally an adult (gosh that makes me feel old ) he has several questions when i return home from dialysis.  I have been in the hospital almost every weekend for about 2 mos and he is so worried.  Please provide any suggestions you may have with how much I should share with him.

I don't want to scare him but I also want to be as honest as possible...

[aharris2]

Even though I am not a kid, I have always found not knowing to be the scariest thing of all. Your son cares enough to ask. Answer his questions. Be open with him. He'll feel more secure knowing his questions will be answered and that he won't be shut out.

Just my opinion.

[Katey]

Thanks so much.  So far I have been extremely honest with him as I think that if he knows everything it will help him stay informed and know that I am ok.  He asked last night on a scale of 1-10 how much the needles hurt and I told him about a 15!  We just laughed and agreed we are thankful for dialysis

[Rerun]

Be honest even if it is painful.  Take him with you to dialysis and have him sit with you.  Explain the machine and how it works.  Knowledge is power.

[Lori1851]

Let your son know everything. I was the caregiver to my son who was 19 1/2 when he started dialysis he told the DR's and nurses they could tell me anything they told him.  I think your son can handle it. A good site for him to learn from is www.kidneyschool.org I like this site and the National Kidney Foundation's site is good to.
Goodluck to you

Lori/Indiana

[boxman55]

tell him everything and then some more...Boxman

[Run8]

I don't think any age is to young. My Youngest daughter is 4 and sometimes she reminds me of the things I cant eat, she tries to tape my arm after I have the needles i, she even tries to help holding my sites after. She asks when am i going to the doctors to get better,meaning when will i get "the call". So, the more they know the better off you will be.

[Ang]

as  above.

my


be  open  and  honest,  get  your  son  involved

in  your  day  to  day  goings  on  with  dialysis

go  to  neph  appts,  get  him  to  ask  questions

[G-Ma]

what everyone said.........knowledge is power...........my Dr's and nurses are impressed by my 14 yr old grand daughter...she is able to ask questions and respond about my dialysis issues on their level and I think that is ultimately more helpful for me too.
Ann

[monrein]

I agree with everyone who has posted.  Not knowing is the really scary thing.   

[del]

I agree with everybody else too.  be as open and honet as possible.  let him be a part of the proces.  Not knowing is alot more scary than having the facts.   

[Sunny]

He is a very caring and loving son if he is asking these questions. That means he can probably handle the truth so be honest with him.
Good luck with him.

[rose1999]

I'd say tell him the whole truth as he will only be imagining all sorts of things.  As others have said it is not knowing that is the worst. 

[cherpep]

I have definitely learned with my kids that what I don't tell them, they imagine 100 times worse.  If I give them the facts, they can deal with the facts, it is so much better than dealing with the unknown. 

My 18-year old son has been wonderful.  I do home hemo, and when my husband is not available, my son helps me with my treatments.  When I get those awful leg cramps, my son helps me by massaging my feet and legs.  I used to feel guilty, and I always apologize to him, but he is actually happy to help. 

My 12-year old daughter has a more difficult time dealing with it - she tends to avoid me when I'm doing dialysis.  It frightens her that I need it.  But, I have been talking to her and trying to get her more involved, even with little things like gathering my supplies.  I think it will be easier for her to deal with it if she stops running away and tries to help. 

I am open and honest with my kids.  Let's face it, this is a scary situation.  However, I emphasize that while I hate having to do dialysis so often, I realize that it is extending my life.  For that, we should all be grateful.

[Bajanne]

You have had some great responses.  My addition is, why not tell him to join IHD?  He would be able to get lots of information and see this renal challenge from all the perspectives.

[twirl]

I say to just tell the truth

[Stacy Without An E]

When I was ten years old my Mom sat me down at a Denny's in Pleasanton (on our way to another doctor's appointment @ UCSF) and told me straight up what was going on.  She peered directly into my eyes the entire time and made sure not to sugarcoat it.

She didn't use cutsie words or talk down to me.  She talked to me like an adult and I've always respected her for that.

Your son's an adult now and if you do the same as my Mom, I think he'll thank you for it too.

[RichardMEL]

He is 18 and an adult. I think even if he was younger you should just be straight with him. As others have said understanding the issues, risks etc is half the problem. He will worry either way and if you don't tell him stuff he will just worry anyway and then perhaps not have some critical point of information when it may be needed. I know as a patient I want to know everything involved and have as much understanding as I can because it gives me a sense of control over my life/destiny. In a way I think if I was your son I'd want the same sort of deal. He may not be able to do anything, but at least knowing as much as you do will be of great benefit to him. Also I feel he may well apprieciate you sharing everything with him rather than keeping stuff from him. I know you want to protect him, but I think the best option is just to tell him warts and all.

Of course the other option is to sit down with him and ask HIM what he wants to know - how much etc. Show him you trust him and want to share - but only if he wants to know. Again, that gives him some choice over how much he wants to know, and you don't have to worry so much about scaring him or something if he really wants to know.

[Bajanne]

Re-reading this thread reminds me of when the doctor gave the prognosis that I probably have breast cancer.  I went home to my 10-year old, at the time, and was totally honest with her concerning it.  And she said something that changed everything for me.  She said "Well, mommy, we are just going to treat this as an experience.  You know we like experiences, even some bad ones."
Those words just reset my mindset, and I went through the entire process as something new and interesting, and that made an entire difference (and still does).
Kids can be more mature than we think at times.

[TynyWonder]

Re-reading this thread reminds me of when the doctor gave the prognosis that I probably have breast cancer.  I went home to my 10-year old, at the time, and was totally honest with her concerning it.  And she said something that changed everything for me.  She said "Well, mommy, we are just going to treat this as an experience.  You know we like experiences, even some bad ones."
Those words just reset my mindset, and I went through the entire process as something new and interesting, and that made an entire difference (and still does).
Kids can be more mature than we think at times.

aaaawww  that is awesome thinking for a 10 year old! 

[cherpep]

Of course the other option is to sit down with him and ask HIM what he wants to know - how much etc. Show him you trust him and want to share - but only if he wants to know. Again, that gives him some choice over how much he wants to know, and you don't have to worry so much about scaring him or something if he really wants to know.

Very nice, Richard.  Thinking from the heart.

[Katey]

Update....
I did talk to my son but really asked him if he has any questions and if he doesn't want to know certain things then tell me to stop.  He said he just wanted to know when I am hooked up to the machine, what is happening.  He also asked about the needles and why I seem weaker when I come home from dialysis.  I answered him all of this and then he asked why I havent yet got another kidney. I explained to him about most of my sisters not being able to go thru with the surgery and how I am on the transplant list.  It went very well.  I told him he is my rock and I get my strength from God and him. 

On Thanksgiving, we all pray for what I am thankful for.  He said "i know it has been a rough year but we know that we will get through it because "the strong will survive"  I sat at the table and bawled!!  He always comes downstairs once I get home from dialysis and fixes me my favorite, Diet Big Red over lots of ice!!

He really is a great son!!  Thanks everyone for all of your wonderful advice!!