Caregivers Support Group

[swbell]

I'm looking for other caregivers of TBI patients in a minimally conscious state.

[yemmahabou]

Hello swbell. My daughter has been in a minimally conscious state for 5 years. She is at home with me. What questions did you want to ask ? What would you like to know ? Feel free to ask

[swbell in reply to yemmahabou]

Hello yemma - I'm sorry to hear about your daughter, but I'm glad she's with you at home.

It's not so much questions I'm needing answered, but just kindred spirits for support. I've previously sat in on support groups for TBI survivors and for caregivers. The connection is not there however, as they are all functioning on some level.

When I tell our story, they gasp. They are taken aback. They look at me with such sadness. They can't relate to the hopelessness & probably don't want to.

Yes, they're also dealing with a certain level of chronic sorrow, but it's not the same. Do you know what I mean?

[yemmahabou in reply to swbell]

I am not quite sure about the position you r in. Have you got a loved one in this condition.

I say never give up hope. It takes a long time to come round but it does happen. Maybe you'd like to tell me a bit about what happened. My daughter keeps improving albeit very slowly. I would love to hear your story

[swbell in reply to yemmahabou]

My son was in a single-person auto accident 6 years ago, at the age of 19. He lost control of his car and hit a tree. He didn’t get a scratch on him, but the jostling and bruising to his brain was very damaging. He was in brain surgery within an hour of the accident, and they did a craniotomy to relieve pressure. The surgeon said he “salvaged” as much of the brain as he could and there was a lot of bleeding. He remained in a coma for about 6 weeks and had several infarcts, or mini-strokes, daily.

We stayed in various stages of hospital for 6 months before being allowed to bring him home. He did wean off his trachea after 2 years, but is still fed through a tube, is incontinent, can’t move or communicate. We have to do everything for him. It is devastating and overwhelming. We just love him so much and take it a moment at a time, even after 6 years of doing this.

Of course we have hope. We have looked at clinical studies for stem cells and electronic stimulation, but everything is so new and experimental. We hit a lot of walls. Doctors / researchers don't want patients in his condition, because he can't tell them how he feels. But I keep trying...

[yemmahabou in reply to swbell]

I agree that Doctors/Researchers don't want patients in that condition. They don't know much either which makes it very frustrating. It feels very lonely as one doesn't know who to turn to. Like you I thought about stem cells and electronic stimulation but it still experimental !! There is no support from anyone !!!!!