Advice From Patients To Caregivers

[V.R. Peterson]

Thank you, @colleensteele, for starting this thread. I’ve often wondered how many times I’ve said things that made things more difficult for my son. While he’s much better since his PTE surgery, we’ve discovered it might not be a permanent fix. I’m following this thread, so if he starts getting sick again, I’ll know what not to say. I’ll also know which things will help. Thanks, again.

[Brittany Foster]

One of the things that is hard for many of my family members to grasp is the fact that there is no “cure” to what is going on with me. I know that they think that each surgery I get is going to fix the problem but that’s just not the case. It can be frustrating to both me and my family members that assume it is going to be a cure all because then they are just let down when the same things keep happening again. I know that everyone just wants us to be better and be cured, but that’s not reality and it is a hard one for many to face.

[Colleen]

@mamabear007 one of the most important things I learned over the years is to give my son the personal time he needs to process things. Especially when he was still a minor it didn’t feel right leaving him alone when he was dealing with something new and difficult. There have been a number of times when in the hospital that he would point to the door and tell me to get out for a while. It sometimes hurt my feelings but he has explained to me that when he does that it’s because he desperately needs some time to think on his own and absorb whatever information the doctor just told him. When I do often find him in a better state of mind when I return and truth be told I benefit from some time to myself too.