Suggestions on helping children to cope with a parent who is sick?

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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/17/2009 10:52 PM (GMT -7)   
I am wondering..to those parents out there..how do you help your children to cope with the fact..that mom or dad is sick and explain it to them in a way so they understand..my daughter often gets teary and when i am crying in pain..she thinks i am mad at her. I have said many times to her that i am not and tried to explain it to her..what are some methods used to help children to understand and not be afraid and feel sad..thanks!

Post Edited By Moderator (Nanners) : 8/18/2009 1:54:32 PM (GMT-6)


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/17/2009 10:53 PM (GMT -7)   
Or she thinks she has done something wrong..which is not true..is it better to not tell them too much info...or bring them to the doctors office..or not bring them?

Post Edited By Moderator (Nanners) : 8/18/2009 1:54:50 PM (GMT-6)


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 8/18/2009 12:11 AM (GMT -7)   
How old is your daughter? I have an 11 (almost 12) year old. I've been sick pretty solidly for about 3 years and been dx for a couple years longer than that. I've taken the path of just being completely open with her. It's scary for her, but I assure her I'm not going to die from it. (I know it's possible, but don't talk about that aspect.) She went through a phase where she was scared to leave me. It took me a while to realize she was scared for me. So, I scheduled her to see a therapist to work through things. That seemed to help quite a bit. But, I did not do that until it seemed important... As much as I am honest about my pain I try not to make it seem like she should be scared. She calls herself the "belly whisperer" now. She likes to listen to my belly and kiss it to make it better.

I know others take the other angle and opt to try to not burden the child with too much information. I've envied that at times, I just don't think it would have worked for us. There is no way I can really hide what I go through, and it seems better for her to know what's going on than to wonder.
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--Compounded budesonide 3mg/daily, Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/18/2009 12:24 AM (GMT -7)   
My lil one is 6 years old..to this point i have been honest with her..she has seen me go through alot over the years..i know it scares her..i do have a counseling app coming up soon..for her..

Post Edited By Moderator (Nanners) : 8/18/2009 1:55:28 PM (GMT-6)


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/18/2009 12:34 AM (GMT -7)   
I explain everything to her..even my medication and she comes with me to my GI and was there with her brother and my her dad (my hubby) during all the recent surgery stuff..thank goodness that school starts soon..this summer i have had hard with times and been often too tired..too sick to go most places...so school is a relief..she will be happy and getting exercise and not being at home worrying about me and being annoyed by her brother crying..

Post Edited By Moderator (Nanners) : 8/18/2009 1:55:57 PM (GMT-6)


lamb61
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Date Joined Jan 2005
Total Posts : 1718
   Posted 8/18/2009 3:41 AM (GMT -7)   
I went through this about 5-6 years ago when I had a major flare. I have to admit I didn't handle it well because I was oblivious to the fact that my then 16 year old was upset. I was in such bad shape healthwise and trying to start and keep a new job that it took me a while to see what was happening. I spent a good six months punishing him for bad grades (including no driver license) then I realized he was scared! So we just started being honest and open with what was happening and his mood and grades picked back up. Sometimes we are so focused on taking care of ourselves we don't truly see how it's affecting others.

Anyway, I think you are doing a good thing with the counseling. At her age they may be able to give you both some tips on how to handle this with her. You just need to let her know it's alright to be concerned about mom, but she's a little kid and needs to go play and be a kid -- mom will take care of mom.

good luck!
 


WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 8/18/2009 7:37 AM (GMT -7)   
This is such a good question. I'd like the answer too. My 16 year old daughter has had a really bad year, as I got sick in December and have been sick since. She was already having a hard time at school, and I got engaged to my now husband in October also. She told me recently that with planning the wedding and being ill she felt like I was treating her like another problem rather than my daughter. The trouble is that this is a challenging time in a child's life anyway, and although I know that my piece is only a part of what she is struggling with, I feel very guilty that she is having additional woes created by my disease. I'd love to get her or us into counseling, but she is extremely resistant for some complex reasons too long to go into here. I have spoken to some youth counseling organizations, and they all say to get counseling myself first. They all say that helping myself is like helping my kids, because I am more able to cope.
44 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March this year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Prednisone 5 mg, Salofalk 2000 mg, Nexium 40 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 8/18/2009 8:45 AM (GMT -7)   
It's tough having a sick parent. I was a very high strung little kid, which in part was caused by my dad's crohn's. I was actually afraid to be around him. My brother would go off with his friends, and tell me, "take care of dad." Instead, I'd hide and be so relieved when my mom would get home from work. Then there was the time my dad was so sick he needed to go to the hospital. I didn't know how to call anyone except for my mom at work, and I guess she called an ambulance then. I sat by the window for what felt like ions when my grandparents and brother finally pulled up (although according to my brother, my grandpa drove a 100 mph hour to make the 18 or so mile drive to our house). Then there was the fear I would get crohn's too, which I did.

I wish someone had tried to help me understand my dad's illness, and to help me cope with the whole thing. It was just this scary mystery to me. My brother wasn't as negatively affected as I was, but perhaps that was because he was 5 years older than me.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


granna
Regular Member


Date Joined Nov 2007
Total Posts : 41
   Posted 8/18/2009 9:43 AM (GMT -7)   

What a good question and one we all need to think about.  My kids are all grown, but that doesn't mean a serious disease does not affect them. My fam. has been through lots of diseases and deaths, and we have 13 small ones to always consider. Here's what we learned by trial and error, remember, this may not work with everone. We have always included the kids, grown and little. We always explain stuff (diseases) to them the best we can then they filter it all according to their minds:We always answer questions honestly, ex: "no honey, I "probably" won't die from Crohn's but there will be times when I will be very sick and in alot of pain"; or in our case: "yes honey, your grma or your dad will probably die from this cancer, but we will make as many  memories as we can and just take a day at a time."  This road is not easy, no disease is, but children (in my belief) are really smart little people, and the more we try to hide or we forget to explain, that is what scares them the most.  Sometimes we don't know what to say to a child, then say that.  Tell them you don't know what to say, ask them a direct question about what they need/want to know. Going to the doc with us has usually seemed to help, the ones that don't want to go don't have to go, there is enough of us to babysit! Give your child choices, like:"this is a bad day for me, I hurt alot or I am really sick, would you like to help me in some way? Would you like to watch a movie with me? Would you like to just be on you own?" A couple of my gr-daus always feel important cause they "remind" me to take my meds, I let them believe it is hard for me to remember (sometimes it is!), so they are important by reminding me to take them.They can tell when I am having a bad day, even the 4 yr old will ask me, "you sick or your belly hurt?" I answer them honestly and then they seem to understand if I can't Play with them.

I'm sorry for the rambling, today is not a good day for me, I am just plain sick, my dau is coming over to help clean my house, that is not like me at all. And the 4 yr old with her will know that "granna is sick today" and his method of making it all better is to kiss my belly and watch tom and jerry cartoons!!!

I hope this helps some with the kids, we have always just treated them like smart little people and have gotten them books and pamplets to read that are geared toward kids.I'd be happy to talk with you more on this if I can be of any help at all, I would be honored.

:

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2009 12:58 PM (GMT -7)   
Aww Spookyhurst that is so sad how frightened you were watching your Dad be so sick. And then being afraid you would get Crohns and then did. BIG HUGS to you!!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 8/18/2009 10:26 PM (GMT -7)   
Thanks Nanners! Even though all of that was a long time ago, just reading your post made me feel better :).
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/18/2009 11:02 PM (GMT -7)   
I got sick when my first child was only a yr and a half old, so being sick is the only way both my kids have ever known me, I've never really had to explain it cuz they've never known me to be any different. I think because of this my kids are very understanding because of the fact this is how they've always known me to be...they know that I have a disease (they're 18yrs old and 16 yrs old now) so they've known for a very long time (when the age of awareness hit them) and they are sympathetic to others they learn of being sick, regardless of what they're sick with (likely because of my illness), so that's a good thing.

Under different circumstances than my own, I would say it depends on the age of the children...many think that when kids are at a younger age they have less understanding (they typically have more than given credit for) but of course not every 7 yr old is on the same level just like any other age group...so depending on the maturity of the child depends on how much info you share and how you share it...you pretty much have to go by your gut instincts on what you think your child can handle, remembering of course that kids in general are pretty resiliant and more clever than we often give them credit for....afterall kids in kindrgarten are probably more computer savy than many adults (myself included).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/19/2009 12:45 PM (GMT -7)   
Like Spooky, I was the child of a CDer and am one myself. And like Pb4, my kids have never known me as anything other than sick. But my Mom was pretty good at not making CD really scary. Certainly there were times when she was very ill and times when she was in the hospital. But, because of my Mom, when I was diagnosed I wasn't really afraid of what my life would be like. I have always been pretty open about what is going on with my kids, but I have never used CD as reason not to do something. I am afraid, given the family history, that they will develop Crohn's and I don't want them to think that they can't have anything other than a wonderful life. So I find a way to do just about anything that I want to do. On the days that I really feel horrible, we would have quiet days where they would play and I would rest on the couch and we would all watch movies. My kids are grown now, but they turned out to be very caring and understanding young ladies. They are the first ones to call a sick friend or offer to bring over soup, so in some ways I think that having a sick Mom made them more compassionate than the average American teens.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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