Your kids and dialysis

[livecam]

For parents who are also patients how do your kids handle your being on dialysis?  Our daughter was 6 when I started and we kept nothing from her.  She visited the unit often, sometimes spending 2-3 hours before her mom picked her up.  The staff all knew her and enjoyed having her around. Sometimes she brought a friend and we had the two cutest little girls you ever saw hanging out in the unit. Since she grew up around kidney disease and dialysis it became pretty normal for her. Nothing really fazed her.  I remember being strict with her about touching anything in the unit and then putting fingers in or near her mouth.  Kids just don't pick up on those dangers and I don't think I ever really got through to her on that.  The only times it was really tough for me in relation to her were the two times she broke bones while playing at home and dad was hooked up to the machine.  In both cases I requested and received a quick disconnect and met them at the hospital.  Not the best move for a dialysis patient but a good move for a parent.

[kitkatz]

My kids were 12 and 13 when I started dialysis.  It was rough. My daughter who is signed on here could give you more about here feelings than I can.  My mother would scare them with talk of me dying.  I let them see the center and would have them sit with me for awhile sometimes.  They did not do it too often.  But they seem to have accepted it as part of our lives.  They think it sucks too, but as long as it keeps their mother alive, they are willing to live with it.

[Mom3]

It is a common practice in other areas for children to be allowed to go back in the unit? Don't think they'd allow that in SC!

Mom 3

[livecam]

It depends on how they behave.  If disruptive no but if respectful and aware then it was ok where I went.

[kitkatz]

In our unit a sign is posted no children under 16.  They were pretty cool with my kids dropping occasionally toward the end of treatment to see me.  Of course my kids were older as time went on.

[Joe Paul]

My daughter is 13, she handles my being on dialysis pretty well. Since she is on summer break from school, she comes along to the sessions, sometimes brings her best friend. The older folks have taken to her as well as she to them.

[cayleighrose]

Our kids were 7, 6 &6 when Hubby started on dialysis. At first they were scared to go into the unit, but eventually they got used to it until the nurse's cracked down on who was allowed back into the room. But since Hubby has been in the hospital they have been able to visit him in the unit they have there and it hasn't seemed to bother them at all. To them is just all  part of who Dad is.

[babi68]

Its amazing how tough our kids are. My kids are 15 and 17(he is autistic) and they are wonderful. My daughter is so helpful and we try to make her life as "normal" as possible. She is into basketball and has been selected to participate in a rowing programme so she is real busy with sport. My son sort of understands that I go to dialysis and one day may go to Sydney for a new kidney. He just knows mum goes to dialysis and is feeling pretty tired.  Actually the other week my daughter and I went skiing and had the best time. I laughed so much I am lucky I don't pee anymore as I would have wet myself. We are very close. Liz

[kitkatz]

My oldest daughter turns 21 on the 24th of September. I have promised her a trip to Las Vegas to go gambling and drinking. (Her, not me, well maybe me).  There is safety in having Mom along on a 21st gambling trip.  It  should be fun!

[tamara]

I have no kids of my own , but my nieces and nephews ranging in ages from 1years of age to 20 come and seen me while I was on treatment in the hospital, they weren't scared or anything they just know it as the machine that keeps aunty tamara alive.My two  nieces aged 6 and 16 have even stayed with me while I have been on nocturnal at home, it was handy they got me a drink in the middle of treatment!

[ray]

my daughter has never seen her mother not on dialysis, as a baby she always went to the unit and has grown up knowing nothing else. She is now 13 years old and can help set up the machine. She is always welcome at the unit as we are all one big family, and they have known her from a baby. When we have birthday celebratins and xmas, ramadam whatever she is alkways helping the staff with cups of tea and plates of treats to all the patients!!!
Though one day my 12year old neice visited and when she saw the blood she passed out!!!

[Bajanne]

Hi, Ray, could you please go to the Introduce Yourself section and tell us about yourself?
My daughter is now 23 years old, but she is not handling this mom on dialysis thing very well.  I had breast cancer when she was 10 years old, and somehow she dealt with it better then.  Now she is a mother herself (my darling 3½ yr old grandson) and she is always getting weepy about my not being there.

[angela515]

My kids are 4 1/2 and 5 1/2, when I was on hemo, they just turned 4 and 5, they would come pick me up each time at the center and would see me getting off the machine, they would get up and sit in my chair, put on a mask... they knew mommy needed to be here because mommy was sick, but they didn't totally understand why. When I changed to PD, they had to be taught not to touch the machine or the supplies and they learned that really fast, and now that there almost 5 and 6 they understand a little more... they know mommy needs the machine to feel better and I need a kidney... but I dont think they understand the whole concept of if I dont use the machine mommy will die.. and I dont wish to scare them so I shall explain more of it as they get older and ask more questions. For the most part it has become a part of who mommy is and its not unusual, its a normal routine mommy does, so they are used to that.

[Foxys-Boy-Toy]

Our son is 14 and High functioning autistic. He is my natural son, and my wifes stepson, although she doesn't say "step"son and he doesn't say "step"mom, they just refer to each other as son and mom. (which is great by the way :-) )

At first when she went into the hospital he was very upset and crying. But since then we make it a point to discuss with him every thing that has happened along the way, and any changes or things we learn along this journey. His first mother just packed up and left without saying anything while he was at school and I was at work, which was very disturbing for him. When my wife got sick, I think the most upsetting part for him was the thought of losing another Mom, especially one that was showing him the love and respect of a true mom. Now that he realizes that with proper treatment etc. he doesn't feel the threat of losing her at a moments notice he is much more comfortable with it. Once he realized if he had a question we would answer it honestly, and that we shared exactly what we could about her situation it is much easier for him to deal with. He isn't allowed in the dialysis unit because he is under 16, but when she was in the hospital for her catheter he made sure he got to visit and felt like he was helping by being there.

I'm getting a little emotional now so I'll leave it at that , maybe add more later, as this is an excellent topic of discussion.

[Treasure]

I am the mother of 4 boys. 3 of them were already away from home when I started dialysis. My now-17-year old has been my lifesaver.  I was doing NxStage for 3 months before my transplant, and Duncan helped with  the 30 boxes that crowded every inch of floorspace in our single-wide mobile home. He never complained about the boxes. Duncan also hung my dialysate bags for me, so that I could hop on the machine as soon as I got home from work.

Most importantly, when my catheter failed and I bled out, Duncan helped me stop the bleeding and helped revive me-- being far more helpful than the EMTs who showed up and didn't have a clue.

My eldest, Anthony, has been a  lifesaver, too. He donated his kidney to me. 

The two middle boys...well, I think that they have a harder time with my condition...and I'm not exactly sure why. Maybe it's that the two of them have a harder time dealing with stress, and having their "invincible" Mom ill, is way hard for them to take.

The boys do think I'm a downer when I bring up dying-- which I do on occasion (ok, maybe more than occasionally...I'm obsessed about it, but hey....)   I just want them to be prepared...and for us to be making the most of the time we have. I'm kinda goofy and non-chalant about the dying thing...cuz that's how I am-- but the boys don't want to go there. 

The thing is, those boys are the only thing that keeps me hanging on...keeps me from walking away from a life on dialysis. I so want to help them realize their dreams...and until they are firmly on the path to those dreams, I can't check out. I feel guilty that my illness keeps me from being more helpful, but I know that I really shouldn't feel that way. But that guilt does drive me to try a little harder.

Anyway... that's my response.

Michelle  ~  Treasure

[angela515]

I am the mother of 4 boys. 3 of them were already away from home when I started dialysis. My now-17-year old has been my lifesaver.  I was doing NxStage for 3 months before my transplant, and Duncan helped with  the 30 boxes that crowded every inch of floorspace in our single-wide mobile home. He never complained about the boxes. Duncan also hung my dialysate bags for me, so that I could hop on the machine as soon as I got home from work.

Most importantly, when my catheter failed and I bled out, Duncan helped me stop the bleeding and helped revive me-- being far more helpful than the EMTs who showed up and didn't have a clue.

My eldest, Anthony, has been a  lifesaver, too. He donated his kidney to me. 

The two middle boys...well, I think that they have a harder time with my condition...and I'm not exactly sure why. Maybe it's that the two of them have a harder time dealing with stress, and having their "invincible" Mom ill, is way hard for them to take.

The boys do think I'm a downer when I bring up dying-- which I do on occasion (ok, maybe more than occasionally...I'm obsessed about it, but hey....)   I just want them to be prepared...and for us to be making the most of the time we have. I'm kinda goofy and non-chalant about the dying thing...cuz that's how I am-- but the boys don't want to go there. 

The thing is, those boys are the only thing that keeps me hanging on...keeps me from walking away from a life on dialysis. I so want to help them realize their dreams...and until they are firmly on the path to those dreams, I can't check out. I feel guilty that my illness keeps me from being more helpful, but I know that I really shouldn't feel that way. But that guilt does drive me to try a little harder.

Anyway... that's my response.

Michelle  ~  Treasure

Hey Treasure... I know how you feel hun. I keep going on dialysis for my children... who are only 4 and 5... I want to make sure they are grown, and started their lives and family of their own before I give up. They keep me strong and keep me going. Keep your head up girl!

[kitkatz]

My girls have grown and flown the nest, but they still need me, even if one calls for money only.  THe other calls to make sur eI am okay and if things are good.  I know the oldest who does not call me often, deals with these things by silence about it.  She figures if she does not know about it I am fine.  LOL  The daughters have already divied up my stuff between them, so when I go they have what they want.  I do not mind as long as I get to keep my stuff now!  LOL  I told them when we would tlak about it that I might get a hair up my butt and sell everything.  They laughed.  They have seen me on dilaysis since they were twelve and thirteen, so      they got a Mom who was sick during their teen years.  But we were pretty active together.  I did the Mom things, we fought, we made up.  I think I did a pretty good job with them.  We shallsee. One is working temp jobs looking for permanent work, living on her own.  The other is at MilwaukeeSchool of Engineering becoming a biomedical engineer.  Where that came fromm who knows... I do know that they still need you after they are grown.  I would like to see some grand children some day, but who knows.

[Foxys-Boy-Toy]

I think for the most part our kids are a lot stronger than we think they are. We like to be the caregivers and their support and backbone, and don't like to think we may have to use their support, it just doesn't seem fair sometimes. But you know, it is a wonderfull thing when your children whether they are 5 or 45 express their love and support in their own special ways.

I allready picked out what is mine from my moms house and she isn't even sick ! :-)  It's a Fox Cookie Jar, don't know why I would want that!

[Sluff]

I think for the most part our kids are a lot stronger than we think they are. We like to be the caregivers and their support and backbone, and don't like to think we may have to use their support, it just doesn't seem fair sometimes. But you know, it is a wonderfull thing when your children whether they are 5 or 45 express their love and support in their own special ways.

I allready picked out what is mine from my moms house and she isn't even sick ! :-)  It's a Fox Cookie Jar, don't know why I would want that!

I know my kids need me, and I need them. Isn't that the master plan?? I think it is that simple statement that keeps us going. I am predialysis so maybe when I start dialysis I may look at this different.

[RichardMEL]

My unit seems to be OK with kids on the whole. Recently there has been an older patient come in as an inpatient. I don't think he's doing too well. Anyway almost every session (he shares session times with me, it seems) his daughter(I presume, anyway) and her young daughter (maybe 5 or 6?) also comes in. Sometimes she runs around a little bit and yells when excited, as kids will do, but she's not too bad and I think most people kind of enjoy a little bit of aciivity in the place since the rest of us are all just sitting around all day

Anyway I don't mind.

I did make a face when one of the nurses told me I should bring my cat in. Yeah, sure....

[goofynina]

My unit seems to be OK with kids on the whole. Recently there has been an older patient come in as an inpatient. I don't think he's doing too well. Anyway almost every session (he shares session times with me, it seems) his daughter(I presume, anyway) and her young daughter (maybe 5 or 6?) also comes in. Sometimes she runs around a little bit and yells when excited, as kids will do, but she's not too bad and I think most people kind of enjoy a little bit of aciivity in the place since the rest of us are all just sitting around all day

Anyway I don't mind.

I did make a face when one of the nurses told me I should bring my cat in. Yeah, sure....

I can understand enjoying seeing a kid every once in awhile but if i am trying to sleep and that kid screams,  i am sorry, but i will have to complain.  Shoot, i am like that at home too   me needs me nap

[jedimaster]

My son, 15 (ok...almost 16)...is very supportive. He is getting used to it, at home. First didn't want to be in the same room with me during dialysis...now he helps with the cleanup, big time company....he IS my best friend. I enjoy his company big time. Now, 6 months later...he even makes jokes about dialysis....but I understand it must be hard to have a parent on this....I can't imagine!

[raina]

I don't have any kids myself, I was just about ready to have them when I got really sick with kidney failure. 

Anywhoo there is a family that used to bring their little girl into the center for the last few minutes of her dads treatment.  I'm no toddler ager, but I'd recon her to be about 3.  She used to run and run and run around so excited.  I kind of enjoyed watching her even though I was concerned.  Should she really jump in her dads lap like that?  What if she pulls out his needles?  How traumatizing would that be for her?

One day when she was running around in circles she knocked over the biohazard bin.   Not the sharps container, the rolley bin.  Needles, tubes, dialysizers everywhere.

She didn't seem to realize it was blood in those tubes and tried to keep running and playing.  I've never seen a mom retrieve a toddler so fast.  And I haven't seen the baby in there since.

[glitter]

We have two teenage girls 15 and 16. Their Dad going on dialysis was very abrupt,we had a three month warning from accident to nephrectomy,and my kids wanted to be informed every step of the way.One of my children is developmentally delayed,so in keeping with not overwhelming her,we just explain things simply.The other child asked alot more detailed questions,which I have answered as honestly as possible.They are truly awesome-through all these months and months of going back and forth to the hospital-not one time did they complain,even when they were up a little late doing homework.And even after a few months,they still insisted on going to see Dad at least every other day,the love in my house is tangible.

[okarol]

Jenna's unit had a sign on the door that anyone under age 18 was not permitted. I took my kids in anyway and the staff never gave me any trouble. But the kids would only be there a little while. Jenna would pull the pillow over her head to shut out the glare of the lights and the reality of the situation. Funny, she was 18 years and 3 weeks when she started there.