Hi Everyone,

The past week has been a real heart breaker for me and my family. I'd say for the past few months, my son Tim has really progressed. He was displaying many mental issues, having several outbursts that scared the crap out of us and really seeming to detach from reality.

He became insistent that he was going to buy a car and drive, even though it has been over 3 years since he has been able to do so. Became very hostile that I would not give him his checkbook to go buy a car and get an apartment.

Anyway, to make a long story short, I placed him this week in a NH that has a HD wing. He doesn't know that this is going to be permanent. It was an urgent, end of our rope type of situation that led me to finally admit that I wasn't able to care for him here. At this point, he believes he is in there to be evaluated (which he is)but he thinks after that, he's going to get an apartment, a car and a girlfriend.

Way back when, I had the idea that I was going to do this HD journey, and that I COULD do this, better than anyone. He was my kid, right? Who better to care for him than me? But it ended up that he viewed me not as his loving mom but as a block to everything he wanted to do. He was lonely and isolated and so was I. He became an angry frustrated man who bore little resemblance to the handsome, funny Tim we knew.

My emotions are all tangled up. He, on the other hand, really seems happier than I've heard him sound in a long time. I struggle with the guilt at having failed in the most important thing in my life, seeing my son through this disease.

Yesterday, we had a family meeting to tell our other sons and grandkids. It was very emotional on so many levels. My youngest granddaughter was crying so hard, because she doesn't want that to happen to her daddy (my other son w/HD). Emotionally drained at this point.

I am so sad, miss my kid.

Thanks for listening.

Carla

This is heartbreaking...but it sounds as if you made a decission based on love and logic and the right decission. I think keeping him at home would have become a disaster for everyone.

Oh gosh Carla, i'm so sorry. I'm so sorry this has happened so soon for you, but things will be much better now for everyone, including Tim because maybe now he will begin to see you as mom again, instead of the prison warden he is now seeing. Hang in there

Carla, you have not failed. I had to place my daughter in a nursing home when she was only 24. It turned out to be the kindest thing I could have done for her. I think when they are young that it is even more difficult for them to be living at home with a parent. It is just not natural for a parent to be caring for an adult child having to watch over them as if they were a child. It creates frustration which is not healthy for anybody. In my daughters case she feels more independent and she is much happier. The same seems to be true for the other younger residents at her home. Our time together is now stress free and happier. Hopefully you and Tim will experience the same. You will now have a much better platform to see Tim through his illness. Believe me, I have experienced it and you will to. Best wishes to both of you.
Howard

SO sorry Carla - what a difficult time and a difficult decision. I don't have first hand knowledge but after reading about so many people's experiences with NHs (as I am sure you have too) it seems to improve the lives of the people with HD as well as the caregivers. It may not feel that way at first but with time it will. I hope the transition goes as smoothly as possible.

Your son wants to be cared ABOUT by you, not be cared FOR by you. Big difference. He doesn't want mother wiping his butt. Nor did Teresa want me doing that for her. I don't want my sons doing that for me in the future either. I want my sons to be my sons and not my nurses. If they try to be against my will.. that's when they fail. I am sure your son doesn't want to be in a home either. But that he will adapt to. You taking care of him, he will probably never want. You do care about your son.. you can't really fail. Also everything Howard said times two. I know Howard doesn't say this stuff to make himself feel better about what he chose. It is in fact true. Placing his daughter was in no way convenient. He moved states so she would live comfortably and he could be close. He wanted to still be dad. And of course he is and one hell of one at that. You will be too as a mom.

Hey Carla- I've been coming here a long time (lurked daily for years before officiallly signing on) and have been touched by many stories- most definitely one of them being yours. The unconditional love,care, strength and support you have given to both of your sons (and I'm sure the other non-HD affected people in your life) has been amazing to bear witness to (via: online for me). And I'm so very sorry that you are feeling so much pain. I wish I knew a way to alleviate it for you all. Those who have already posted have said it all, I think. With any luck, this unit is a good one and he will be able to carve out a niche for himself and (as others before me have already said) re-establish his mother/son relationship w/you. Here's to hoping in a few weeks, we will be hearing how well he is doing and you are on the road to feeing better too. (I know. . . time moves sooo slowly when we are hurting). Sending you some of my famous (in this area) positive and strengthening thoughts... hugs too

Carla , you gave this alot of thought . You made a decision based on love as well as need . Try not to secound guess that decision . When your mind wonders to " we should be able to keep Tim out of a nursing home" stop that thought . Replace any negative thought over this decision , with a positive thought . He will be given good physical and emotional care . You as a family will still be a major support . Especially now that you can rest and take time for yourself to recoup . Taking care of you is taking care of Tim . And any time you can share with a family member , the poitive thought of how , you as a family are still being suppotive of Tim , but now he is somewhere safe . If it was me , and he asked me , "when am I getting out ?" I would repley , when you are better . This is an accurate statement , after all , no one knows how medicine in the future might help your son . So , as a family be proud of how you have tried your best and will keep trying your best , to support Tim . Thinking about you. db

Carla,

In our heads and hearts we feel that if we don't take care of them ourselves, then we have failed them. We have abandoned them.

But when you get right down to it, it takes a team of people to properly care for someone with HD. Trying to do what it takes a whole group of people will destroy you and him both.

In reality, you were not doing him any favors by trying to keep him at home. You have done the right thing. He could have been hurt at home because you can't watch him 24/7. He might not get the care he needs for certain problems because you didn't recognize them.

By putting him in this specialized facility, you did the absolute BEST thing you could have done: you have given him over to experts. Now you can take care of him by participating in the care and making sure it is directed to making him have the best possible life given the circimustances.

Don't feel Bad. You did the only thing you can do.

Hi Carla,

Well, I have been struggling for so long about my dad and wondering when and how to make this next step. I have been scared to commit to the choice - I guess I have been waiting for some "big" incident to really make it for me? And what would that be? Wandering from his house in the freezing weather? Hallucinations? Almost choking to death all alone in his house? But, when i read your message I realize those are the big incidents - i just try to minimize all those things because I am scared out of my mind. You are showing such strength for Tim. He is lucky to have a mom like you. And if it's any comfort at all - you have given me strength to make the next move too.

Carla,
My heart goes out to you. I know, as a mother, how much you want to take care of your son and how hard it is that he can't have the car, apartment and girlfriend that he wants. I know your heart is breaking right now. You have worked so hard to help both of your sons. You are an amazing mother. The nursing home is often the best for both the care giver and the HD person.

Paula

Hi, Carla,
I'm so sorry for what you're going through. You are not a failure!! You are doing the most loving, selfless thing that you can do!! I'm so sorry for the pain and heartache you're experiencing. From what you've said, though, your son sounds happier to you! That's wonderful news! Maybe he finds comfort in being around other people experiencing similar issues and/or some sense of community; whatever the reason, I hope that this continues and you find peace in your decision! I'll be thinking of you and your son!

Hi Carla, I too had to place my son into a nursing home. It was heartbreaking at first but now after time has passed I know that it was the best thing I could have done. He is definately happier.
I am still involved in his life and have gradually gotten him to understand that I just couldn't provide for his needs at home any longer but also that I would not ignore him. I do all I can to provide those special little things that make his life comfortable. He has made friends among the residents and now is not so isolated.
Maybe wanting to do the things he wanted was also a way of saying he really needed to be in a different environment.
Please allow yourself time to get used to this new way. It will work and you will come to understand that it really is for the best.

First off, thank you all for your thoughtful, caring and supportive posts. Really, it seems there aren't adequate words to express how much it means.

After our family meeting Saturday, (Thank God it was after), Tim called Mike. I would have hated for him to have not been prepared so I do feel there is a higher power with a hand in this.

Mike is really taking things hard. He took a vacation day on Monday. I am keeping in touch with him.

Tim has called for us to bring him home, he has also called his brothers. I told him we would come visit him on Monday which was not what he wanted to hear. He had a couple of complaints, said they only shower 2X per week. (a call to the NH cleared that up) So he will now shower every day.

Sunday he called for us to come and get him so that he could watch the football games. Dummy me, I forgot to ask about cable. He now has cable hooked up to his TV. I heard from Mike that he was able to watch one of the games somewhere in there and Mike gave him the highlights of the one he missed.

When we go on Monday we will tell him that due to my out of control high blood pressure and diabetes, the doctor has said I must take a break from care-giving. I will encourage him to work hard at his PT and to continue to try to get to know more of the folks down there.

I am trying to stay in the moment, it's hard. I'm thankful that I have all of your collective knowledge and encouragement. I can totally feel the love being sent my way...you all have done much to lift my spirit and comfort me.

I will stay strong in my conviction that this is the best possible place for Tim. I can't seem to get used to how quiet the house is now.

For all of you, I am sending my love right back to you...along with my deepest gratitude for the gift of this group and this place.

Love,

Carla

Thank you for updating us. You will be in my thoughts.you will be able to do this "one day at a time"