I divorced my husband two years ago not aware that he was at risk of HD and showing personality symptoms that are probably due to HD. Now, we are waiting 2 weeks for results but his movements and other things are 'textbook" for HD. Harder to trace back in his family history but I have suspicions that his father had it and possibly his sister has it too. We have 3 teenagers who live with me but have moved more to becoming caregivers for thier father as his cognitive problems have worsened. I am in the middle. I am struggling to act normally infront of the kids but the sobs of despair are stuck in my throat 24/7. I want the answer but I dread telling the children. I don't know how to help them cope with this news. How have others told family that are at risk?

I know this is so scary. Doesn't matter what anyone says, you will know what to do when the time comes to help your kids. We were just straight up with ours. Told them when we got the test results and tehy have been a real part of our journey. They know they are at risk. Our guys are older-all in their thirties. They have all taken it well and seem to understand . They each feel differently about whether or not or when to get tested themselves. It is very personal. One has a child already, and the other 2 are single. The married one wants to get tested, the middle one wants to get tested when he decides if he wants kids or if is future wife wants him to when that time comes. The younger one has had big panic attacks and doesn't want to get tested unless he has symptoms. His girlfriend of 4 years has been very supportive, however, I don't think she totally gets what this wretched disease does to a man, a marriage and the future in general should he test positive at some point. It's ok to show emotion in front of your kids, this is breaking your heart and I would bet they know more than you are know already. I will include your family in my prayers and we are all here to support each other in anyway we can, so please feel free to share whatever is on your heart. Again, you will know the right thing to do, just as you would should they have cancer or any other possible illness. You will go into Mom mode and live it out as best you can! Hang on to hope!
Vicky

Vicky

My son has three kids and they knew he was going to be tested and there was no holding the news back. They were waiting and when he walked in he just burst into tears and told them. We were all holding each other and crying. Such a sad scene, but life has gone on and we are all coping. His oldest tested at 21 negative and the other two are still deciding. It is very personal.
We have not hidden HD because it was hidden from us for many years. I also divorced my sons dad, never knew what I was dealing with. I do not know if he ever knew he had HD, he went missing for many years and just recently I found out he had passed.

follow your instincts and just be there for your kids. Learn as much as you can about HD.

Take Care,

Carla

Thank you Vicky and Carla,
Your response to my post makes me feel less alone and that is worth more than any actual guidance. You are right, love will guide me and it will hurt but I hate secrets in families and even this short waiting time seems dishonest. Maybe we should tell them that he has been tested and let them prepare themselves a bit.
Jackie

Most important to be honest and up front with them. Teenagers are very perseptive so they probably suspect something already. How they react will be influenced by your actions. Let them know that you will always be there to support their decision as to whether they want to get tested or not for the gene. It will take them awhile to absorb the news so give them plenty of space and support.