mmebrady, I just knew you were going to say that about this being a forum for HD, but you yourself did explain about the child and the abuse, so we naturally rallied around the girl. I understand where you are coming from, but do you understand where we came from? That we aren't brutal, that we are just making sure she'll be OK? And that may mean finding some way to leave this man in the care of someone else?

I think mmebrady is in a good position to make the call and she sounds like someone who is doing their best to do the right thing.

It doesn't sound like she's judged the guy to be a pedophile ... just a HD patient whose filters have gone. (Or at 74 other things could be going.) She's kicked the guy out to protect her daughter. I believe I'd probably make the same call in her situation. I could live with that call.

Generally the objective with the filterless is to set and maintain boundaries. We can all work with our loved ones until the boundaries are consistently ignored. It's only at that point we are forced to get them to "the system" for their own safety and/or the safety of others.

Steve

mmebrady,

I do understand where you are coming from. My husband has HD and we have 3 kids. While I'm quite sure that my husband would not sexually abuse our children but, he did become violent at times towards them as well as verbally abusive, he also did those things to me, but my main concern was for the kids. He is now in a nursing home because it's the safest for everyone. He also is much happier and is being taken care of. Now instead of being a caregiver I can go and just visit. We actually have some good times now. The pressure is off for both of us and I can concentrate solely on the kids and since 1 is only 5, he deserves the best that I can give him. Maybe you can look into placement for him? The people on this forum are very passionate, especially when it come to kids. They are wonderful group of people even though you didn't get the response that you were hoping for.

HD affects all of life, you cannot separate out one issue from another. One thing I have learned over the years is that the process of adapting to Huntington's disease is insidious. Our boundaries change because they have to. We accept behavior that we would not accept from people who are well. Because the process is gradual, we can wind up accepting some behavior that crosses boundaries that should not be crossed.. You talk to doctors, you talk to social workers and again and again you hear, "That's the disease not the person." You internalize this. In my experience, the professionals do not always point out when action must be taken and we do not always see it for ourselves.

Here's an example. I attended an HD convention with an 'ask the doctors' session. A woman got up and asked what she could do about her husband's violent behavior in the home. The doctor who answered the question talked about medication, de-stressing the environment, and looking for triggers. Another woman stood up and said, you didn't point out to her that she could call 911 and be safe. The doctor looked absolutely shocked and said, well yes, I guess she could do that. He had focused on what could be done for the patient, not the safety of the patient's wife and children.

So part of what we do here and what I do in PMs and private emails when someone writes to me is point out when it appears that those boundaries are being crossed. Any one of us at any time in dealing with HD just might not see things clearly. This includes me. Maybe we don't recognize the psychological harm being done to a child or maybe it gets even worse. Let me give you an example. Years ago, a man posted on in online HD support forum about the difficulty he was having in forgiving his for not lying to CPS when they were called in by someone who observed his wife hurting the child. The child had spent years in foster care because the father kept his wife at home, but it was the father who was angry at the child. Now that may be an extreme example of someone who has 'drunk the Kool-Aid' so to speak, but it happens. Another example is a poster who confessed to hitting her husband with HD. Our immediate response was concern for his safety, as it should be. It was great that the person was asking for help in changing her behavior but first her husband needed to be protected.

There have been posters here who were abused as children, whose words were dismissed and whose needs were ignored, and we know that it causes lifelong pain.

One of the priorities that we have here is safety. It has to come first lest there be consequences that are devastating to the entire family, including the person who is ill. We also need to think about the psychological well being of all concerned as well as any physical problems caused by stress. We balance needs all of the time but sometimes we have to triage. I think that we should be respectful to each other but I also think we need to point out when boundaries might have been crossed.

As this has been discussed, I am reassured that mmebrady took action and that she is addressing her daughter's needs. But we really did need to be sure of that.



Edited 1 time(s). Last edit at 04/22/2011 12:55PM by Marsha.

Alice, that was part of my initial point. There is no one else to care for him. We visited his drs yesterday, and I brought up assisted living, but we all agreed that since he is still functional, it is not the time to consider that. Because his HD was so late onset (he did not become symptomatic until he was in his 60s) apparently the mental/emotional can be worse than the physical. The son he is closest to does not want to know about HD, has said that if he becomes symptomatic he will commit suicide, and has implied that if his father chooses to kill himself, then he would not necessarily intervene. One of his sons lives in another part of the country. The other two are not fully aware of the severity of the situation, although I will have to change that very soon.

SteveI,

thank you for your kind words. You hit it on the head. I do not believe him to be a pedophile, but the filters are DEFINITELY malfunctioning. The new boundaries have been set, and I am in control of enforcing them.

Judy F ,

thank you for your insights. I am sorry for what you have had to endure as a result of HD. Verbal abuse is an ongoing part of HD, but he reserves that for me.....and the occasional bout of road rage (although I opened the door yesterday to the possibility of the drs revoking his license -- it is getting to be time. he has no car of his own, but he drives mine when we are together, and it's getting to be time for that to no longer be an option) Again, the drs don't think it is time yet for placement, since he is "functional" as far as taking care of his apartment and finances. I am truly relieved that there is some support here, because I don't have any. I have been estranged from my own family for over a decade, so I am going through this alone. There is a local support group about a half hour away, but it is difficult to get away in the evenings. The upside is that I got him to agree to go back to the Center so we can be counseled together once a month. That is a tremendous relief, because there are NO counseling resources locally who are in any way familiar with HD.

Marsha,

insidious is a very accurate word. Knowing that is is not the person but the disease is why I stay with him. I did realize a boundary was crossed, so I did take action to protect my child, and I will continue to keep her from him, but I still do not believe that jail would have been an appropriate consequence, all things considered (although if that had been my daughter's choice, I would have followed her wishes in a heartbeat.)

Thank you all for your input, and I'm sorry if I responded harshly. This is a very difficult situation, as you are all aware, and with HD there really is no light at the end of the tunnel.

You weren't that harsh. We were harsh too. And it's just because it was so shocking what we were hearing, that i think, well for myself anyways, it was so shocking, and a natural response is to want more info to be able to understand, you know? And really, i think we're all able to understand and grasp your situation better now. I'm sorry this happened to your daughter, and so glad she's getting counselling and support, but also, this must be very hard for you too.

it's very hard for me, on more levels than I can count, and I am truly alone in this, which is why I reached out to all of you. Going forward, the monthly counseling at the Center will be a Godsend, and I'm hoping the risperidone makes a difference as well. Time will tell.

Thanks

Tracy

Does her father know about this? Is she receiving any type of therapy? She may not be showing any symptoms now from the sexual abuse but that's not to say she won't in the future. I'm not trying to be judgmental, but I think your original post made it seem like you were taking the whole matter lightly. I am a licensed social worker and honestly, the doctor could loose his license if it were found out that he knew about this and did not report it. It's not his decision to make whether or not it should be reported, it's just what comes along with the job. I also do sex offender treatment with adolescents who have sexually abused different members of their families or other people.

You know, i guess what i have been trouble understanding, i guess the biggest thing is, you moved him out of the house, but how can he still be your boyfriendl. I mean, i and others could maybe understand if he was no longer your boyfriend, but you wanted, as a friend, to get him help. But how can you still have him as your boyfriend after what he did to your daughter? And another poster posted about someone with a record of being a molester, and when Marsha asked a question of that person, no answer, just no answer. And i wonder if that's what your daughter gets also, just no answers. We are here for support, but honestly, you haven't given us back anything to support. And Eric stood up for me and Alice, why? Because this is a very caring forum, and in my last post, instead of thanking Eric for what he did, which is what i should have done, i tried instead to say, well maybe i can understand, but no i don't understand. I mean, what if he needs to go in a nursing home? And it's only been 6 months since he molested someone? Sorry, but that sure wouldn't wash with me if i was a nursing home. Has he molested others in the past? Why are you still with him and what type of support is it that you are looking for from us?

I know what you mean, Barb. This thread has left a bad vibe in me, too. As if now that she feels we support her wish to help this man because no one else will, everything is hunky dory. Why not give the case over to social services or other helping places, or if you can't do that, just make a report of someone needing help, and leave it to the powers that be. Apparently she still loves him, which can't be helped, I guess, but I would certainly wean myself away for my daughter's benefit. Just because her daughter says I'm all right, doesn't mean mom should continue to be the guy's girlfriend. Oh, well, I don't get it, either, Barb, but I'm letting it go, as of right NOW. OK, no, right NOW. Well, maybe in a little while...

I don't think this is that big of a deal. The lady is like everyone else doing the best she can for two people. You make some compromises sometimes to do that. People don't change their mind on a dime on the advice of strangers.. or concede points that quickly. You plant a seed and if it's good advice for someone, it will take eventually. Making the same point three times doesn't help. I have tried it and it is counter productive. The guy is freaking 74 years old and got impulsive. He was removed from the environment. He's in a new environment where it's not likely to occur again. He's not likely to get help elsewhere, cause none of us get help elsewhere. She has chosen to be his help. It's not the very worst situation for anyone. I would drop it.

All right, dropped, good advice eric

The thread is now closed.