October 2009 Weddings
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My poor sissie (long)

Well, as you may recall, my twin sister's husband has an agressive case of Huntington's Disease, and at 34, he is on disability, had his license revoked for safety reasons, and now is not going to be able to live with his family. His agression has gotten so severe, even with extensive therapy and medication, that my sis has decided that the time has come for him to live somewhere else. He has become emotionally, verbally, and sometimes physically abuse to my sister, their son, and now his father and brother (all this weekend when his youngest sister was getting married... police were called again). We all knew this time would come, but not so soon. I feel bad for him but am relieved that Karen might finally be able to live in peace. The problem now is finding a place for him. He's not old enough for a nursing home (which is where his mom went in her mid thirties when her symptoms kicked in), and his family can't take care of him any longer. I hope that the social worker and my contacts in the national office in NY can help steer them in the right direction. I do not practice any religion, but they do, so please, pray your hardest that this will get sorted out and they have the strength to get through it.

Thanks for listening! Here's a cookie Smile

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Re: My poor sissie (long)

  • So sad.  I had to google Huntington's Disease to get a better understanding.   My FIL had dementia for the last few years of his life and it was so sad and really hard on my husband's family so I can relate a little.   Your family is definitely in my thoughts and prayers.
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  • That's tough.  T's and P's sent express. 

    How long have they been married?

  • Oh Kel, I hope for all the best for your sister and both families and I can't imagine what a decision that was for his family and her.   I really hope they find the replacement for him so he can live comfortably and your sister can be at peace. 

    Many thoughts and prayers headed to your family!

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  • Oh that is awful, my heart breaks for your poor sister. I can't imagine how difficult that must be. Lots of T&Ps her way.
  • You are all in my T&P's during this difficult change.  I have had multiple family members who have suffered w/ dementia and Alzheimer's, so I can def relate.  Its hard to watch and feel so helpless.
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  • *hugs* to you and T&P for your family. That is so stressful. Especially big hugs to your nephew.

    I have no experience with Huntingtons or anything like it, but DH's mom has paranoid schizophrenia, which got so bad when he was a kid that he had to be put in foster care while she was hospitalized (she was abusing him and his brothers and his dad had turned to alcohol to deal with it). I know what a lasting effect that has had on DH's life, and the fears he has about succumbing to a similar fate or passing it down to our children. I admire your sisters strength and pray that she and your nephew can find some peace.

  • Kel, I'm so sorry for you, your sister, and your family. I know this must be unbelievably difficult.

    Your sister should look into residential communities that specialize in neurodegenerative disorders... most of those places will also take someone of a young age. It's most important that wherever he goes, the staff will know how to respond to his illness. And since HD targets people so early in life, age shouldn't be a problem for those places that have seen people with HD before.

     Your family are in my T&Ps. 

  • Another thing, your sister should check to see if they have a local support group for families affected with HD. They would probably have some good recommendations for treatment facilities.
  • How terrible! T&P all around. It's so scary when it's someone close to you, or the idea that it could BE you or I . Sending all my warm fuzzies....
  • imagedvshaw:

    Kel, I'm so sorry for you, your sister, and your family. I know this must be unbelievably difficult.

    Your sister should look into residential communities that specialize in neurodegenerative disorders... most of those places will also take someone of a young age. It's most important that wherever he goes, the staff will know how to respond to his illness. And since HD targets people so early in life, age shouldn't be a problem for those places that have seen people with HD before.

     Your family are in my T&Ps. 

    This is really great advice and I will be sure to pass it along to her! Thx!!!

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    After 22 cycles and 4 failed IUIs, Serafina joined our family through IVF/ICSI, born 8.28.12
    Surprise! The Sequel is due 12.8.14!

  • Bless her for what she has had to go through.  Thoughts and prayers to all of her family, including her husband.
    My baby girl is a married woman...and now my baby girl HAS a baby girl. Time unfolds in such an amazing way. I've been blessed!
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