[KDlady]

My sister, Shanna, is terminally ill with Huntinton's disease (HD) an inherited neurological disease which my mother had, an aunt and uncle had and they inherited it from their mother. We both had a 50 - 50 chance of getting the gene for this disease all who have had it have since passed away (before the age of 45). My sister got the gene for HD- I did not. I have two cousins who were born to the aunt with HD - both have HD- One has already passed away, at age 30. So in this generation - I am the only one who was at risk who has not developed this disease - who does not have the gene. On top of this -the family has huge issues with physical, sexual and emotional abuse and no stability what so ever with my mom in and out of various mental hospitals thoughout her life. While I should be very grateful and feel blessed because I did not develop this disease, I do not. I feel guilty. I feel burdened. I have major survivor guilt and when my sister went into a nursing home (at age 39) I went into full blown PTSD. At times I love her with all my heart - I wish I could trade places with her and at other times I hate the idea of even seeing her. I wish I had someone who could really understand this - the condition is rather rare and the support group I belong to seems to believe that to rage at this disease and my situation is unhealthy. That just adds more guilt. She has 3 children who are at risk - they can be tested after age 18 but many people choose to not be tested. She also is married and her husband and children visit her faithfully at least weekly if not more often. I am married and have 2 children and am grateful everyday for the fact that my children will never have to watch me slowly wither away mentally and physically and will never have that worry themselves - but that gratefulness is for them not myself. Does this make sence or does anyone understand this?

[splitz]

KDlady,
I'm sorry to read that you are in this situation and yes it makes perfect sense and I understand it.
Fortunately I don't have anyone in my family with HD but I have looked after several people with it and understand all the thoughts around it, especially guilt of those who don't have it or who have passed it on to their children. Its a horrible disease and I think raging at it and the situation is more than reasonable.
I doubt very much that your sister would want you to be feeling so guilty about not having it, she's prob very relieved for you. Maybe sometime when you visit her you could tell her how you are feeling? You might be surprised at how just saying it to her and acknowlegding it will make your burden a little lighter. You have nothing to feel guilty for and while you might 'know' that you need to be able to 'believe' it.
You have so many losses in your life that it's not surprising that you are feeling so bad. Do you have someone you can talk to?
Sending you good wishes.
Splitz

[KDlady]

I do have eople to talk to and sometimes it helps. And I have had that conversation with my sister both when she could understand and recently even though she can't walk, talk, or eat by herself and probably does not understand. And your right it does help - for awhile. But the cycles of grief tend to cycle (hence probably the term cycle) birthdays, holidays are the hardest. Thanks so much for your response - I think I need to just process it "outloud" and this helped.

[Perna]

KDlady, it is hard to have such a life-long -altering situation in ones life. I do not have any diseases in my line but many female relatives whose mothers died when they were infants/young, mine included. I think it is harder for those who have devastating events in their early years to face forward and not look in horror behind them all the time. The urge to play "what if" and wonder what one's life might have been like is strong in me. I am going to be 60 next month and have grown past lots of that but still hear echoes of it when I do anything family-related.

I know what you mean about visiting your sister; my stepmother became senile and I "had" to visit her in the same wing of the same hospital my mother died in and the thoughts and deja vu of the past drove me to therapy. I cannot imagine the pain of having so many around you in your life so you have to witness similar scenes over and over. It was a lot of "help" to me when my stepmother finally died in 2001.

[thunderbear]

Originally Posted by KDlady

My sister, Shanna, is terminally ill with Huntinton's disease (HD) an inherited neurological disease which my mother had, an aunt and uncle had and they inherited it from their mother. We both had a 50 - 50 chance of getting the gene for this disease all who have had it have since passed away (before the age of 45). My sister got the gene for HD- I did not. I have two cousins who were born to the aunt with HD - both have HD- One has already passed away, at age 30. So in this generation - I am the only one who was at risk who has not developed this disease - who does not have the gene. On top of this -the family has huge issues with physical, sexual and emotional abuse and no stability what so ever with my mom in and out of various mental hospitals thoughout her life. While I should be very grateful and feel blessed because I did not develop this disease, I do not. I feel guilty. I feel burdened. I have major survivor guilt and when my sister went into a nursing home (at age 39) I went into full blown PTSD. At times I love her with all my heart - I wish I could trade places with her and at other times I hate the idea of even seeing her. I wish I had someone who could really understand this - the condition is rather rare and the support group I belong to seems to believe that to rage at this disease and my situation is unhealthy. That just adds more guilt. She has 3 children who are at risk - they can be tested after age 18 but many people choose to not be tested. She also is married and her husband and children visit her faithfully at least weekly if not more often. I am married and have 2 children and am grateful everyday for the fact that my children will never have to watch me slowly wither away mentally and physically and will never have that worry themselves - but that gratefulness is for them not myself. Does this make sence or does anyone understand this?

Hello, Kdlady. i first want to say i am sorry that you are going through this and that your sister and her family is going through this. I don't know much about HD or have known anyone with it, but I can realate to the fear. My mom had MS. My sister and i have a 50/50 chance of developing it. My mom's symptoms showed up in her mid-late 20's. A few years ago, I started having weird things happen to me. Here lately I have been having muscel weakness in my arm and face. And tingeling. I understand you are grateful your kids don't have to watch you wither away. It is hard too see that with your parent. I hope and pray my son does'nt have to take care of me throughout his childhood. So everything you have said makes sense to me Stay strong