Hi Everyone,

I guess this is more venting, but I'm just so confused. Recently I met someone I fell in love with and I decided to propose, she accepted, then she told me she carried the Huntington's gene. I was fine with that, I felt I was strong enough to be there through it and help her in any way. I saved up money to help with IVF, I had bought a home a few years ago thinking this will be a good way to start a family, etc... She ended up being incredibly bossy and demanding. She was friendly one minute, then the total opposite the next. She wanted kids immediately, she wanted me to buy a new home on impulse that I couldn't afford, she was demanding a crazy expensive wedding. I was able to financially handle the wedding and kids, but once she kept piling on stuff, I just fell apart. I didn't understand how someone would be so unthankful and demand so much, I made a commitment to God and her to be there through Huntingtons. I tried so hard, it was just too much for me and I left, now I blame myself daily, and just don't get it. I know that I need to forgive myself and her, but I don't know how someone could demand so much, I don't know if she already had the disease and just wanted me to fulfill her desires, or what. It is so confusing. I don't know if anyone else has experienced this, it just sucks.

Thanks.

When it comes to HD and the causes of bad behavior, I follow the advice of Dr. Jane Paulson to “Err on the side of kindness.” While it is certainly possible that your former girlfriend was a selfish and grasping person, I would guess that had that been the case, you wouldn’t have fallen in love with her. It seems more likely that she was already affected by the disease when she began to make irrational demands. Many people with HD become much more impulsive, buying things that they cannot afford because the money happens to be in the checking account, or sometimes when it isn’t, even though the money should be spent on the rent. There can be a loss of understanding about the limitations of money and the consequences of not paying bills.

People who have not cared for loved ones with HD may not understand all the symptoms. There is a tendency for people, even doctors, to focus on physical symptoms like involuntary movements, balance problems, and difficulty in swallowing. But the psychiatric and cognitive symptoms which typically begin to occur first are even more disabling.
Another one of these symptoms is irritability over trivia that would not have bothered the person in the past. That was my first husband’s first symptom; before the disease began to affect him he was very easy going. Very early on he started to have trouble getting things from short term into long term memory. For example, a friend called me and invited us to dinner. I checked with him to make sure he didn’t have other plans for the evening. He did not and enthusiastically told me to accept the invitation. The night we were to go he blew up, accusing me of making plans without consulting him. He was really angry. I assured him that I HAD checked with him and he assured me that he would have remembered. A month later we were invited again and I said, now I want you to remember that I checked with you. I made quite a big deal about it. And again he blew up a few nights later when I suggested we get ready to go, claiming that this was the first he had heard of it. I couldn’t understand what was happening. We didn’t know he was at risk at that time so I was bewildered.

Is any of this ringing some bells for you?

It is not an easy decision to leave someone with HD. The mood swings could be a result of the dieses or just the way she is, sounds like you weren't together long enough to know which way it was. Don't beat yourself up over it, you deserve to be happy too, just like in any relationship

I have been going back and forth with a similar decision for sometime and although at this point I have chosen to stay I cant say for certain what the future holds.

Thanks for the responses. That did ring a lot bells for me. I sometimes would just ask myself what in the world is going on? How does someone make such impulsive decisions about such important life decisions. Not many people can take a sunday drive, and buy a house on impulse. I questioned everything that day. It was hard. Yes, it's hard to not beat myself up for it. I told her I couldn't afford a home and it was like talking to a child who had no understanding of money. I was totally numb that night and didn't sleep for days. It was such a difficult situation I didn't what to do. It's like you love someone with all your heart, but you are presented with demand after demand that not many humans could take on. Talking about sending our kids to private school when we didn't have kids yet, having her dad move in with us, spending tons on the wedding, having my parents move closer to the kids that we didn't have yet, need to live in a certain neighborhood in a big home, paying some of her bills, having two kids immediately through ivf, etc... I was like what is going on here?!?!? It totally took me by surprise. That is true everyone deserves to be happy. The relationship had a huge toll on me, sometimes I think like I threw in the towel and didn't man up, but I'm human at the same time. I'd wish it would of worked out. It just wasn't meant to be I guess. I was blind, I don't know if her demands were the way she was or part of the disease.

Thanks.

Ringing bells for me! This was so similar to my husband's behavior. His mother and uncle have HD, so when I started to notice this drastically different behavior, I knew this is where we were headed. The disease has totally self centered my husband, who was so incredibly selfLESS before the onset. I have had to get to the point where I just really pick my battles, otherwise I would be battling daily! I am not interested in the next years of our marriage becoming a constant power struggle over something that he can not help, and arguing DOES NOT MAKE IT BETTER, his brain CAN NOT accept rational explanations. At some point there will be bigger decisions that I will HAVE to make (with or without his approval), such as his driving cessation, control over finances and so many more.

Hate to say it, but you can forgive yourself for not deciding to marry her. You can be there for her in other ways if you chose to. This is a wretched disease that robs not only the person with the disease, but all of the people who love them for who they were. We have been married for 22 years and we are just beginning this bump in our journey.
Praying for you and all of the families and caregivers of this devastating disease!

That is so similar to what I experienced. It is still hard to forgive myself. Everything happened so sudden. It has probably been the most confusing, heart breaking, frustrating thing I've ever went through. I didn't even know she carried the gene until after the engagement. One of her family members said I was being trapped which at first I thought was very mean, but as months went by I kind of understand as mean as it sounded. I thought I was mentally and emotionally prepared for the long haul, guess I was wrong. It's probably for the best. Thanks for everyones responses.

Unfortunately one of the symptoms of the disease is the person with HD can be unaware of the psychological changes they are going through, and deny there is anything wrong with their behavior. In their mind, every decision they make is completely logical, and we are the ones who are wrong. We went through several years of out of control spending and emotional outbursts from my husband before his family doctor recognized his physical symptoms in an annual physical. We did not know there was a history of HD in the family.
Now 5 years later, I am still trying to dig myself out of our financial situation, but with a combination of several medications he is calmer and less obsessed with buying everything he sees. It helped when he allowed me to take the credit card away from him, and he is unable to write checks. He gets cash allowance weekly to spend on whatever he wants, which is a huge relief for me. I can finally pay our bills without worrying he'll bankrupt us.
Like Vicky, I've been married for 26 years and we were blessed to have a normal marriage for about half of that time. I don't know if I would have had the strength to marry him had he already been having symptoms. It has been heartbreaking to watch him go through the changes. Even now as I sit here typing this, he is sitting about 10 feet away from me, obsessively breathing in and out in short loud bursts while tapping his feet. I asked if he was ok, he nods yes, and continues on.

Thank you for the response. I had no idea about all the symptoms of HD that weren't physical. I spent so much time trying to justify the financial demands she wanted and none of it made sense. I totally understand the denial that anything is wrong, I was struggling so much trying to understand until I lost it emotionally. Friends from Church would tell me I was placing the blame on her, but I was at a loss, and they weren't in the relationship. I couldn't explain anything and it scared me.

Not being able to put your finger on the problems without the HD diagnose is difficult. It is more difficult when the disease is diagnosed and you begin to understand then that there is no easy solutions, there is no cure and problems can get much worse.
I think to understand that you gave her the very best life you could even just for the short time is better than her not having those years.
You gave her those years and for a while she was able to feel complete although not in a rational way to most. Even healthy people don't always get that.

Thanks for the response. I thought I was going to give her the very best life I could. Not to sound unreasonable or pretentious, but its not everyday you meet someone that is willing to pay and go through IVF and provide the best life they could, pretty much drop everything. It just sucked it wasn't enough for her, even if it was the disease or selfishness, it totally sucks. I guess sitting around being upset about it won't help anything either. The way I handled the breakup was disastrous. The whole relationship was a disaster I guess. It's that feeling of letting everyone down, and not being a "man" about it. Men have emotions too ironically. It's so confusing.



Edited 1 time(s). Last edit at 09/29/2013 12:26PM by rob3232.