Hi Guys..... only been on here once before and appreciate the feedback from you guys. THANK YOU. Need your advice again in relation to my boyfriend.
we have had another argument and once again he says we are over as he did when we had the last one. I know at the time he means it, we both say horrible things to each other I end up leaving the house and tell my self that this is it too. We then don't see or speak to each other for weeks.. I then feel really really bad as I feel as if I have abandoned him and that maybe I should call him or go and see him to make amends.
He is very stubborn and doesn't contact me.
He has fallen out with several family members and no longer has any contact at all with several of them , 2 of which are hd positive as is he ..He doesn't have all the hd symptoms like the chorea but appears to have all the psychological ones, ie. anger , depression, which he has meds for. stubbornness and basically self centeredness.At times he is the most lovable kind man tells me he loves me and were making plans for the future , next day its completely the opposite , making horrible remarks being obnoxious uncaring and distant blaming me for the arguments which for the most part I try to avoid , I ve also noticed if anyone makes a remark about him he takes it really really badly and harps on it for quite sometime again not sure if this is hd or just his male ego being dented. Iam so confused as i don't understand if he is just being an ---hole .
I have always told him that I would be there for him.And I still would like to as I love him to bits . but Iam so confused as Im not sure if he really means it or if it is the hd talking.
If it is the hd, I wonder if I should try and make things right and be there for him, as no one else is, I do not want him to keep pushing everyone away then end up with no body to care for him..BY THE WAY HE IS 44.Please some one help. Thank You.

i dont know debonaire,

all those things you describe, sound like situations any woman
could have with any man.... seriously... relationships!!!!!

on the other hand, hd will insinuate itself into any relationship
whether the person is exibiting symptoms or not. its about the decaying effects of 'the prospect' of having it... a young man may want and yes even need a relationship, but realizing the consequences of their life, they get cold feet, and there is a constant struggle. if he has some emotional and cognitive issues presen as well, than...just sayin, its complicated....

Dear Debonaire,

If you envision your future relationship as being a caregiver to your "boyfriend" for the remainder of his life. Driving him everywhere, preparing his food and even feeding him when he can no longer feed himself. No longer having give-and-take conversations as the person no longer has the ability to be concerned with your feelings or no longer has the ability to talk. If you ever want this person to have the ability to do anything in your interest...then you better keep walking and take the out. It won't get better....it will only get worse. There is NO better! By the way the 44 yoa does not help the arguement one bit. If he does not have control of his emotions now there is no way he is going to!



Edited 1 time(s). Last edit at 03/29/2010 02:23PM by LizzieAnn.

Thanks guys for your quick kindly response I think the last 2 posts are 100% right .. its complicated..

Its just so hard to walk away when a person appears so unaffected but you know that things are going to change so drastically.

And you love them... if the person had cancer for example would one walk away... hd is just so different as there doesn't appear to be any light at the end of the tunnel.

Thanks again.

debonaire, You are right...there is no light at the end of the tunnel and the tunnel is very, very, very, very long! Unlike Cancer, maybe a cure or a quick death. Not the case at all with HD, a very looonnnnggg tunnel and ultimately it always ends the same.

Sorry, if this goes against those who are upbeat about the current research and trials, but it's too late for my phd and debonaire's boyfriend is 44 yoa. If debonaire decides to stay with this man she is "relinquishing her future" and I think she needs to make a well informed decision as things are not in a good light for the relationship at this time.

Debonaire,what you really need to ask yourself is do you really want to be this man's carer for the next however many years?If you do is this out of love or guilt?You say you feel really bad as you have abandoned him and he has fallen out with family members.So do you feel responsible for him to?Would you still feel this way if he was Mr Popular with loads of friends and family?If you are both struggling already with his anger and other psychological issues then maybe now is the time to go?Like LizzieAnn says this diseases is a long cruel one and you would have to be a very strong person to deal with it.Life has chucked you a 'get out of jail free card'.Move on and love again.A hard choice but not nearly as hard as the life you would lead.....

Thanks again LizzAnn...



I hear what your saying and your right ... just needed to hear it from someone else.

I just feel so guilty and sad that I will never be able to make him better..

I am hoping that we could remain friends and i could help him out when i can..

But its so hard and I feel so Selfish..I also wonder what it would feel like if I were in his position?
Would I want him to be there or would I want him to Leave??

I think I realize I need to put the guilt behind me and move on...so many Questions??????? Thank you again.

Your dammed if you do and dammed if you don't.A friend is what he needs maybe if you could both handle that?Guilt is a word you may hear a lot on this bored,you would also feel a lot more if you stayed together.This disease will make you go insane to some days when your tired and need a break.Friends and family may stop visiting you to as they carn't handle it,just look at other threads on this subject.Of course this is your life and your choice,I wish you well.

Hi Blondie

Thank you to for your advice to.

I hope I don't come across as doing this out of guilt I do and genuinely Love this Man.

That is why this is so hard for me. I keep asking myself that if I really do Love him then I shouldn't even have to ask myself what to do I should just do it...

Your also right when you say he has given me the get out of jail free card..

Deb,

Sometimes...I wish someone told my husband to RUN when he met me.

As a gene positive- I have seen my mom (dad has HD) turn into a misrable shrew, and I fear the same for my husband. So...selfish...possibly...

Just keep that in mind. ;/ sorry.

~ Laura Q.

ok well now i've got to step in and give a dissenting opinion here....

many people have stayed with their hd love, and were happy to take the journey... not everyone quantifies their life by all the 'happy and successful standards of everyone else... people are fulfilled in different ways and so no one can tell you, that you would be wasting your life...

is there reason to feel bitter for alot of people? abosolutely, but if you go back over threads, there are people who dont consider the time they have spent caregiving a tragic waste of their life. just sayin... there are many people here on this site with hd, and thankfully they have people that love and stand by them, thank god huh? they are as worthy of love as anyone else... they just have a different set of problems.

it may someday be very heartbreaking for you, or it may be a labor of love, either way, dont make your decision lightly k?

The difference may be that the people who stay with caregiving do so and can do so because they get cooperation. I often think of what Dave said to his wife, that he could do it if she cooperated with him, took her medication and didn't try to do things that she couldn't do physically (like housework) and then hurt herself. And she agreed. I said the same thing to my ex and he agreed but he stopped cooperating. I couldn't stay with a man who is 6'4" and 250 pounds who set up an account with a bail bondsman so he'd be prepared every time he hurt me and I called the police. Which I most certainly did.

It may seem that people here are always telling a new poster not to marry someone with Huntington's Disease. But if you'll look back, you'll see that when that happens there are serious warning signs. Remember the woman whose boyfriend with HD insisted she had taken money from him when she hadn't? And he disliked her minor children? Everyone here told her to get out the relationship, including those with HD. Those are warning signs.

I think the warning signs here are that the relationship already isn't proceeding smoothly. If he didn't have HD we would tell her that this man sounds immature and not ready for a relationship, not if all is peachy one day and the next he's saying horrible things and telling her he never wants to see her again. If these are HD symptoms, it doesn't bode well for the attitude of cooperation with his doctor and significant other that is needed to manage this disease.

Plus, it helps to have years of a good relationship under your belt before undertaking caregiving duties.

Last line is the key Marsha I think...

Deb-- I think the last line of Marsha's post is a good starting point to think.

Good luck hun. I hope your happy, whatever you do.

~ Laura Q.

ofcourse Marsha, you have good points. and i'm not discounting them.
but sometimes i feel that we are a little callous.
we are talking about the very people who inhabit this blog, and frankly where would so many be without the love of someone... would we for instance tell Barbs husband to think twice about staying with her?
NO... Barb is incredibly sweet and i'm quite sure he treasures her. and whats more Barb isnt going anywhere anytime soon, so she is more than worth investing his life with...

and there is maggie, i dont really know her, but she always speaks of her husband as if she treasures him. i may be wrong, but i dont think she regrets stayin with him. there have been others here who have said the same. i dont want PHD'S to think they cant be loved or arent worthy, if i was the one with HD, i'ld feel pretty despondant, if i heard nothing but 'run away' comments...

so although i'm all for straight talk, i am concerned about blanket statements.

Barb and Dan had decades together before either one developed health problems. A good marriage will have happy times and bad, that's just life. Plus, Barb understands the disease and is working with her doctors to treat the illness.

Debonaire won't have those happy decades. She's telling us that she has been dating someone whose behavior she doesn't like. I wouldn't like it either, I don't want to be with a man who doesn't want to be with me and often that is just what is happening in the relationship. If Debonaire was my friend and HD wasn't involved and she wanted my opinion, I would tell her not to marry this man who can't make a full commitment to her. So am I going to say, oh well he can't commit to you but he has HD and deserves a caregiver so YOU commit to him? I'm sorry but that doesn't make sense to me.

People deserve love and they deserve to have people respect and care for them. But no one deserves to have a spouse just because they are sick.

From a different perspective, you don't have to be a spouse to be an advocate or a source of support for someone with HD.

Every person with HD needs at least one person to be their friend and advocate. The more - the merrier.

I agree with Marsha. I've been with my husband since high school, 25 years and thought that I'd never have the feelings that I do now! Life is soooo hard right now that all I can think about is running away, but with 3 kids that's impossible right now. I'm finding out just how mean my sweet husband can be and it scares me. If I were to meet him today, I'd say NO WAY!

I'm sure that not everyone acts the way my husband does, but if Debonaire's boyfriend is acting badly now, I don't believe it will get better. I'm learning from experience. Even with having many great years together it's almost more than I can handle.

I AGREE JUDY F- and thats only seeing it in my parents. Imagine how much I didn't see!?

~ Laura Q.

I think Marsha's last line is the one I caught on to too. Starting as a caregiver in a relationship is the roughest way to go. He hasn't "paid into the system" of a relationship to sustain one in lean times. I am speaking as a bf... if she wants to contribute in some way in a caregiver support role from a comfortable emotional distance like Steve suggests.. that's different. Dialing it down to friendship and acting out of friendship might be the way to go. It's not a matter of callousness. It's a matter of truths of peoples experiences as they relate to this woman. Dan didn't marry a pHD nor did Maggie. I might have.

This pHD has a right to self determination. He dumps her and stays away. So if he wants love... it seems not to be with her. Why tell her to keep pushing it? I wouldn't tell anyone else not HD related to keep hounding a person either. One who is dumped and otherwise routinely mistreated. The guy may be a jerk or she may be clingy... can't know. But it's not sounding like romance to me in any form. So why say it is or should be? One of the two says and acts like it's not.

HD almost always involves impulse control. This gentleman shows it with his outbursts. He seems to have no impulse to call her to come back. I have to conclude that he knows what he wants and doesn't want. He doesn't even momentarily want to be in the relationship. So there is no reason to push her onto him. Had he been begging her back I might think something else. That is what I base my opinion of her question on. What he wants. Not what she wants or doesn't want. HD doesn't work that way. Of all HD traits.. the ability to express what they want and what they think and feel in a given moment is something you can bank on. They will act on it as well. He may deserve love.. but he also gets the right of self determination. He may have determined this love is not what he wants. That's his and every pHD's right.

My wife couldn't control her outbursts, and gradually refused to work with me in any way.

One day she wanted me to quit my job. The next day she wanted to move to the beach. It was always something she didn't like, and the world was out to get HER.

It was a gradual process, it took over 10 years for her to get to that point, and it was years later when I had to bathe her and have people in to help us that she became violent towards me and our son.

I can't imagine I would have ever formed a relationship with her at that point. The only thing that kept me going was remembering how she was BEFORE.