My boyfriend for the past 4 years has HD. Between us we have 6 kids - older now. He can tell the symptoms are increasing. We were living together but it was too much when the older kids came home for the summer. He says he will not move back in - it is too disruptive for him to go back and forth. He is talking about assisted living which breaks my heart. I always wanted to be there for him. I guess it probably is the best decision but i just want to be with him. I am afraid he will shut me out. I love him with all my heart and soul.

Aloneandscared,
My husband is in a nursing home because he got violent. I commend your boyfriend for taking the steps early and sparing what might be a bad road ahead. I think one of the biggest problems with HD is denial.
My husband once told me that the HD makes it hard for him to keep up with the conversation. He can't process what we're talking about quick enough, gets confused and it makes him feel like 100 people are talking to him at once. When our kids are running around being kids (ages 9-26) its just more then he can handle. He would go in the bedroom and shut the door but that only worked for awhile.

The mounting frustration lead to anger and violence. He doesn't even remember most of it. Its like blind rages.
Then he gets so upset he can't sleep which leads to more falling, choking and chorea. Its a vicious cycle.
He would get depressed when the kids begged to go somewhere but we couldn't go because we couldn't leave daddy.

In the nursing home its quiet. He gets his medication on time and never gives the nurses problems about taking it. He eats like he should and can nap and be left alone.
As the HD progresses he has asked to come home a few times but when I remind him that it isn't the quiet space he's used too, he admits he probably wont be able to handle it.
I give your boyfriend credit for taking action now and not waiting until things fell apart. I know its hard and everytime I want to have a pity party I just remind myself that there are a lot of people out there that have worse issues. Sometimes its hard to be thankful for what you have when what you have isn't what you thought it was going to be.

Hi Alone,
I commend your boyfriend for taking steps to make his life what it needs to be for him. You can still be very involved with him in an assisted living situation. Indigo is correct when she says that denial and unawareness of progression is very common. Just love your BF and see where this leads.

Take care,

Carla

Thank you both that helps. I was feeling like I failed him. And Indigo I totally hear you - I have experienced alot of the "outbursts". Yesterday was particularly bad - he just kept running me down. Last night he apologized and said he had been having a bad day. And there are times when he says or does something exceptionally mean and he has no recollection of it. This disease makes everyone suffer. My 13 year old idolizes him and misses him terribly - and he is not even his real dad. Sorry today is not a good day for me - it is hard to be strong all the time. Somedays I just want to sit in a corner and cry.

Aloneandscared,
I know that this journey is hard, but you can get through it. Try hard to stay happy and make the best of these sad circumstances. You can still be there for your boyfriend, even if he's not living with you. My son's dad lived in a nursing home for the three years before he passed away, and by far, we became the closest over those three years. I was able to go see him and enjoy him, even during difficult times, there was still a time that I could go home and rest and re-energize, so I could give him my very best when I was with him. He needed me to be patient and kind and loving, and unfortunately, I'm sad to say that when he was home, I was so depleted a lot of the time, that it was hard for me to always be patient and kind and loving, which only frustrated him more and caused more anxiety for him. I wish you all the best on this challenging journey and pray that you'll find a way to make it work and be happy.
Michelle