What Can A Caregiver Do To Help?

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JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 10/6/2008 10:52 AM (GMT -6)   
I posted the other day that I think my 17 year old son is beginning to flare and it appear that is what is happening. After the kids were dropped off at school, I finally just let the tear pour out that I have been trying to hold in since my son told he he saw blood on Saturday. I need to be strong for him and for my other kids even though I feel like curling up in a ball and sleeping until all is well again.

My question is what can I do to bring him comfort. Those of you who had this as teens, what did your parents do that was right and what did they do that you wished they hadn't have done. When he was younger it was easier to "be there" for him and make him feel better with little treats like rented movies, video games, toys, legos etc. He would let me visit him in the restroom and keep him company, of course we are way past that now. What broke my heart is all through breakfast I could tell he was fighting back tears and if I spoke of touched him all would break loose. What do I say? What do I do? It hurts me so very much to know he is suffering and I can't make it go away. He actually hugged me before he left for school this morning. I can't remember the last time he hugged me, I usually am the initiator of hugs and he is not that into hugs at this point.

I just want to scream, "It's not fair" at the top of my lungs!! I just want to make my child feel better!! 8 years he has dealt with this. I want him to have a happy life.

What can I do to help him?

Thank you all for being here. I know I'm not the one with this disease, but I can tell you that it hurts me so much to be so helpless!!
Julie

Mom of Son 17 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


Sunshineonmyface~
Regular Member


Date Joined Sep 2008
Total Posts : 202
   Posted 10/6/2008 11:32 AM (GMT -6)   
awww I am sorry mom :( I think he is feeling a lot of fear right now. Remind him that he will get into remission again, that this too shall pass. Remind him to just to just take it one day at a time, worry about it tomorrow.

He will have a happy life mom. I know this isn't what you expected, but life never is. I don't say this from my experience with UC, I say it from living through some horrible circumstances and seeing how people survive and thrive despite what twists in life they come across.

Its normal to be discouraged for a bit, just keep telling him the truth. He will get through this.

I will be praying for him. I am sorry he is going through this. ((((((((((big hug))))))))))))))

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/6/2008 1:28 PM (GMT -6)   

I can't tell you what the person with UC would want you to do but I can certainly relate! Having to watch your children go through this (or anytime they are hurting) is so hard for the parent. It's our job to keep them safe and we feel we aren't doing our job. Add to this that they probably inherited some crappy (pun intended) gene from us and the guilt doubles. I have spent many showers crying my eyes out.

My daughter is 17 and her flares were horrible. She allowed me to "baby" her by setting up the couch with her pillow and blanket, etc. I have sent her to school with her almost in tears knowing she was healthier than before but still not feeling well. My son's Crohns shows up differently and he also keeps more of his discomfort to himself. I still ask alot of questions and he answers but I still feel like I am letting him down.

When they are not in as much pain, I have at times asked each of them what I can do for them. You can always buy him a small lego set. Yes he is past that age but you can remind him that you are always there. It may bring a smile to his face remembering those little things.

I am sure he and your daughter know that you are always there for them. You've taught him to deal with his UC over the past several years. He has learned how to be strong from you. Just letting your kids know you are always there for them makes it easier. They know they can always count on you. And that is what being a parent is all about.

Stay strong. I hope your son is feeling better soon. Let me know if you want to talk.


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 10/6/2008 5:36 PM (GMT -6)   
Thanks, Sunshine!! Hugs, encouragement and prayers are much appreciated!!

Thanks for you words of understanding! Bennie, how is you daughter doing? How is she emotionally with the changes to her body? How has it impacted her social life? How is her overall quality of life now verses before surgery?

Getting him a set of legos is a great idea, I think I'll do that. I just may take you up on that offer to talk one of these days.

How about the UCer's out there that had this as a teen, what do you recommend I do to help my son?

Thanks!!!
Julie

Mom of Son 17 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 10/6/2008 5:48 PM (GMT -6)   
keylime, you sound like a great mom. Just keep being there for your son and letting him know that you're available anytime. As a teenage boy, I bet he doesn't want to talk so openly about his guts! I'm sure if he needs help, he'll ask. One thing that my parents could have done differently was not be so emotional/cry in front of me; it makes me feel worse and begin crying as well! My parents are supposed to be the strong backbone and it freaks me out when they're not!
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 2 Anucort
 

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