When my husband was first injured, we didn't know that our lives had changed forever. We thought we were dealing with some broken bones and torn ligaments and didn't realize his brain was somehow affected. As time passed, his friends slowly disappeared and mine stopped asking how he was doing.
We still had five teenagers in the house at the time and none of us really knew what was okay to talk about, and when. We did a lot of walking on eggshells and worrying about what might topple the cart - there was a lot of crying and lot of frustration in the beginning. Slowly, his children stopped calling. He has four boys and none said "Dad, I'm upset because ________." They just stopped talking to him altogether. All four of my children still lived with us and we had a lot of conversations that started with "David is upset. Don't mention _______." We lived for about a year like that.
One day, David found a nearby support group for "Mild" TBI survivors, which was just being formed. He told me he thought he had the wrong room at the rehab, because everyone looked normal. (Ha, normal.) He cried the rest of the night. He found people like himself, trying to find their way through the confusion. He was over-joyed that he wasn't alone and that people would accept him just the way he was, because they were "broken" too.
After a couple of months of watching him head off to his meeting and come home full of hope, I decided I wanted the same thing. In our area, there were no "caregiver" meetings and the closest I would get to sharing my journey with others was by attending his meetings. Every now and then another spouse would attend and we would share, but for the most part, everyone seemed like they were moving on and I was stuck.
Enough time has passed now that I know support groups aren't for everyone. Sometimes, I need to talk with someone else and feel connected to something outside of my current reality. Living with a brain injury is difficult. So is living with someone with a brain injury. Seek support if you need it. A burden shared is a burden halved.
I am burned out. I have been caring for my son for 21 years and I am so tired of being abused mentally that I cry all the time. There are limited resources and just now have received upto 25 hours weekly of support. I still have to take a day to clean his house because he will not allow others to clean. I was 37 years old when my son was hurt and I am now 59. I have a full-time job and he it too high functioning for a group home. His father lives close by and does not accept any responsibility. It is so hard to watch others have the freedom of their life and I have not had that luxury since I was 37. I am feeling resentful at my exhusband and just tired of people in general. Very sad.
ReplyDeleteI would also be frustrated with the lack of support you've described. I hear a lot of "what do you do for yourself" and people are surprised when I don't have an answer.
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