True, everybody has a different take.

I still think that any long term illness, especially one that is "irreversable" like this disease is, changes your view of the relationship.

Most people can maintain a hardship for the short term, weeks or months. But years? No; that takes someone special. It's not a given that people will radically change their lifestyle.

Especially when the person you are changing it for is less and less like the person you started with. As is the case with HD, or even Alhemiers.

Yep, Fred. The more time you spend being a caregiver, the less you spend being a spouse, or brother or sister or other relationship. You might remain married, faithful, and co-habitating but the partnership of marriage gives way to something else. Sometimes the marriage evolves or dissolves. I don't think the well spouse dictates what happens to the marriage as much as they try to take responsibility for. Many things are outside of one persons control. Sometimes they feel guilt if they can't be ideal and take responsibility for that, and sometimes they compare themselves to others or some other yardstick and feel they did better than average. It's almost oozing in the background of lots posts without saying so, that a relationship is changing and how to hold on to the relationship as it was, as opposed to how it really is. Everyone is trying to hold back game changers, whether husband/wife, siblings, or child/parent.

Marsha tackled several good questions with good answers on the caregivers webinar she held... people should listen to it.

The bottom line is it is all made harder, at least in my case, by trying to maintain what used to be for my children while trying to adjust to the new things..like the slip into more childlike behavior. I think as a spouse I am not ready to give up that part of my life to the lable of caregiver....maybe that makes my life harder but I'm just not ready to do that yet!

So many important topics, and it all boils down to the support and understanding that we get here and hardly anywhere else. Thank you Steve and Marsha, for providing and perfecting this awesome avenue that we can all say we live on, for better or worse.

I am live here, and i always will, and i am thankful that i am not alone. Some times its hard, and sometimes its not. We are all a family, and you can't get much better than that.

Much love to you all,

Suzanne

Where can I find Marsha's webinar?

[www.hdsa.org]

I just noticed that the entire "question and answer" portion of Marsha's talk is not included. The talk is good as a stand alone, but the Q&A was really good too. I have written and ask they add that part, but for now it's only the talk. Still listen... it's very good.



Edited 1 time(s). Last edit at 01/13/2010 08:59AM by Eric.

Balone said:

"This is by far one of the most complex, fascinating and emotionally charged threads I have seen on here and, my humble opinion is that it is also one of the healthiest. It is a reflection of both the complexity and individuality of the disease and its manifestations. Threads like this are critical to educating all of us and it is exactly that diversity which makes it so. For those who have HD and provide us such incredible insight and those who love and care for them who share their experience, observations and strategies. "

I couldn't agree more!


And also: "You will notice I did not use the terms Phd or Caregiver and I try not to. I understand the origin of those terms, but for me (and this is personal, not a judgement), they can become labels which may inadvertantly influence the ability to do exactly as was suggested, and consider each situation on an "individual" or "case by case" basis."

I agree with the spirit of this as well. So let me clarify. I refer to MYSELF as a PHD, because I choose to.

I refrained from even HINTING that a close relative might have HD for years after I suspected she had it - simply because she obviously didn't want to see herself that way - and I was honoring her wishes.

I don't think that "labels" are bad per se. It would be pretty hard to communicate, if we never used them.

I just think we should all have the right to label ourselves - not have the labels of others imposed upon us.......

jl



Edited 1 time(s). Last edit at 01/13/2010 10:21AM by jl.

Well for heaven's sake - who's the same person they were when they got married?

Who would WANNA be?

Relationships evolve/dissolve without the hindrance of degenerative diseases!

A zillion Americans (isn't it half?) - are proof of that!

jl

Jl, your points are well made and I respect them, I hope by expressing my personal inclination to not use them was not seen as a judgement of others, because that is certainly not my intent. In fact, having only recently learned of the origin and fact the P was capitilized to emphasis the importance of the person over the disease, I was struck by the sheer brilliance of that one. Must admit though, when I first came on this board and started seeing Phd, I just thought it interesting that so many HD positive people had such a sought after degree....

It is also clear to me, that use of the terms Phd and Caregiver are in no way intended to exclude or marginalize anyone as "labels" can sometimes do. And you're right, in many cases they are necessary to facilitate communication and provide context. So thanks for sharing that.

No jl... that doesn't work. Teresa and I were very comparable as partners in marriage, as friends, lovers, parents, business partners in personal finances... and other ways. There is only one thing that dissolved our union that way and it was Huntington's disease. I won't let that be minimized by acting like I might have been part of the half of divorced couples who married at 16 years old.. or cheat with with the neighbor or are substance abusers or just creapy or selfish or incompatable. I wasn't a prefect husband and Teresa wasn't a perfect wife, but as partners in marriage we good at it and would have remained so. The partnership evolved or dissolved only because of Huntington's disease... not by choice, not by personal flaws of either of us. It was nothing that could be marriage counseled back to health because she had Huntington's disease. I could improved myself in many ways to the point of perfection... and the marriage would not have improved back to health. I don't blame Teresa, it is the disease... but the fact is the fact in our case. We are married without her having the responsibility of being a wife and I am not a husband to her in the partnership sense at all. We do have some sort of special family relationship... I do love her. That's what I feel about it... and I don't feel guilt for me or anger at Teresa that we are not a in a marriage now..even though we are married.

I wasn't going to address that point, but as Eric has raised it....I will, because his situation and mine share many similarities. And, because he is further along in reconciling the realities, I've certainly used him as a guidepost on my own journey (thanks Eric). Yes, HD IS the cause of my pending divorce, and it is not initiated by me. While the papers may state, "irreconcilable differences", HD is the only "difference". Prior to HD there were no differences that we could not reconcile, even if that recociliation sometimes meant simply agreeing to disagree. We were bestfriends, lovers, soulmates and most importantly, equal partners in an incredibly fulfilling relationship.

HD changed all that....bottom line. And, while I am not angry at her, I am still dealing with anger at the situation and that is why I think it is quite OK to say.....HD sucks.......for EVERYONE. I am not suggesting you were Jl, but simply for the record, I will never allow this divorce to be counted, seen or perceived as being just part of the statistics. To allow myself to even consider it in that context is, for me, to disrespect what we had before HD, and what we may be able to carve out now that it is our reality.

No, we were not exactly the same people who met and fell in love, we were better people because we had learned, loved, shared, supported and grown together, but in this case, HD ended that journey and that quite frankly has simply broken my heart.

Eric,
Everytime I read one of your post, I feel that you get it. You know how how I feel and what I have experienced. I met my husband when I was 15 years old, we grew up together, we had our ups and downs but life was good. We are still able to do things together go to the movies. Went on a vacation recently,but I had to make sure everything was very well thought out and not to strenouos.My husband speech has gotten to the point he is beign taught to use an assistive device, he also has a feeding tube, has diffiuulty walking short distances but we still are able to go out. The difficult part is that everything is now up to me. A marriage may be 50/50 or 30/70. it has it's ups and downs on who is taking more effort ,time etc. But with HD I have 100% of the responsibilities, for my husband, finances , retirement etc. Oh, I can talk to my husband about retirement,and his advice that I used to rely on is now taking with a grain of salt. Before I give my husband any information on our finances, family, house maintenance, no matter how minor the information is , I have to decide on the consequences of telling him. Is he going to obsess about it, will it cause more work for me? It's exhausting. I love my husband and the relationship has changed from being 100% spouse, to 90%caregiver/ 10% spouse. The burden can become so heavy and overwhelming. I have learned to be selfish for myself, since no one else will. Do I have to shorten my life and my dreams because of HD? To a great extent probably yes. That is why I original posted this subject. Who helps unfortunately few people do. Only others who have gone through the same experiences can understand.



Edited 3 time(s). Last edit at 01/13/2010 12:34PM by Debra.

I have never participated in an internet forum ( of any kind ) until just recently ( this one and one other ). But one thing I can say about being new here is you do pick up a vibe, at times, that some feel there is a conventional wisdom, which has already been established - and anyone who runs against it must be in a state of denial, or is not equipped to understand what they are really saying.

To me this does not seem helpful, and only leads to people becoming discouraged to post. I mean who wants to read someone say to someone else,"I know what is going on in their life, even if they won't come out and say it." Often I find my mind scrambled, and something I want to learn more about one day, or an hour ago, or a minute ago, presently escapes me. Does this mean I no longer have need to learn about this? No. So, the fact there is a place where I can come to read about what is on my mind, or just to read is a tremendous aid, and the off chance someone else is able to remind me of what I had been thinking about is only an added bonus. ( the more posts the greater that chance )

Therefore, I find all posts which may have a tendency to "intimidate" other readers from speaking their mind to be a disservice, as it may rob me from that bonus I was looking for. ( and to be frank all of us on here could use all the bonuses we can get ).

If anyone disagrees, please feel free to say so, b/c I am new here and could be wrong (always a chance of that ) but just wanted to throw my 2 cents in after reading a ( perceived ) pattern in some comments.

Brett T

PS I don't want to sound like I am complaining, but I am but am trying to do it in a constructive way and not to sound personal, b/c it is not.



Edited 1 time(s). Last edit at 01/13/2010 12:21PM by Brett T.

Well, I know that some have sometimes found my posts "intimidating" in the past.

I certainly don't see them that way. I most certainly don't intend them that way. I mean only to be honest - and consider honesty a GOOD THING!

JL

JL,

While I understand what you are saying and agree to a point, in many of our cases on here that is not the case.....Many of us have grown and changed together but this disease has forced a change that has made our marraiges somewhat one sided taking away that give and take and growth that makes a marraige and changing it into something quite different.

Brett, I do think that there is some insight to be found here - I prefer to think of it as unconventional wisdom - that has come from people sharing the details of their lives openly and honestly over the last decade. Plus we are big on keeping up with the research literature so that we can have the most accurate up to date information about the disease available.

Can you be more specific about what you see as the problem?

Marsha, for the very reasons you cite and I agree with ( well maybe not SOME of the unconventional wisdom ) I think it is crucial that this site attracts and retains as many new people out there suffering alone now as possible. I mean just recently we heard from a woman in Montana who literally has no support around her at all, and if she wants some she is going to have to create a group herself. ( I understand this is not all that terribly unique, and there is a good chance many here had to do the same ) But to me the way human nature is; you will reach a certain comfort level with people after you have been "together" for so long , and in so doing it becomes easy to forget when making a remark, that some have not benefited from the greater context of what you have said, and could just get pissed off and not want to come back, as a result.

This is my concern. I am not suggesting that people not be honest, for HD has had enough dishonesty surrounding it for long enough. I am saying we all need to remind ourselves of who our audience is before taking particular issue with what they say. If they are new, understand, as they need time to learn who you are, you need time to do the same. Maybe trying to reach for additional things you thought they said, in an effort to make an additional point, will end up doing more harm than good.

...and while I have the "maybe's" out, maybe I am doing this now, or maybe I am making no sense, or maybe I am the only one who sees it this way, or maybe walking the line between pHD and caregiver is as difficult to walk as the one between hope and reality while suffering from Chorea.

Brett T

Sorry for not answering your question.



Edited 1 time(s). Last edit at 01/14/2010 12:10AM by Brett T.

I find people generally get pissed off Brett, when they ask for an opinion, and then actually get an opinion back, and they dont like the opinion. Reason being, they really did not want an opinion in the first place. For instance, you asked about hd and rages, but you didnt like the answers you got. Well really that's too bad. I don't always like the things that are on the forum here either, and some of the very sad but true stories, so i can say, this place is too down for me, or i can use those opportunities to help me deal with my own fears about hd, and bring resolution to my feelings. You asked about rage, because you said you had trouble with rage, and then you didnt like that phd's, yes i said phd's, because, that's what i am, and proud of it, get lumped into one category about rage. Well yeah, that's how it works. Rage is one of the difficult aspects of hd, it's real, and you have to deal with accepting that. If you dont like it, then dont ask or read about it. It's that simple. I'm not trying to be mean. I'm saying we are not going to stop telling the truth. It is you, you are being inflexible, so try being more open. You said all the posts here from phd's have been from phd's that haven't had trouble with rage. That is so not true. Mine were out of control at one time, but i took control of that and got proper meds. You've said you have problems with rage, and want to know about meds, but you havent said if you're currently on any meds, and you're thinking of a dose change, or if you're not on any meds, and want to know what types of meds could help. So tell us more about your personal experience about this, ask questions, and uhmm, yup, we will answer



Edited 1 time(s). Last edit at 01/13/2010 10:36PM by Barb.

Barb, I think you need to go back and read what I "said," and it's really the assumptions that I take issue with, not the opinions. You did a pretty good job of doing this right now, and maybe only convinced me I did have a point. Writing a sentence that starts with, "I'm not trying to be mean.." does not make one feel welcome here. What I have written has been in an effort to be constructive, and did not have only myself in mind. I don't know any of you, so to me none of this is personal.

Brett T

PS Stevei, do you remember where the hell I put those mulligans?



Edited 1 time(s). Last edit at 01/13/2010 11:37PM by Brett T.

What you perceive as you being constructive, is not, it's coming to an existing forum, and whining that you're not being applauded enough for saying you dont like how things are done here. What kind of response would you expect to get from that?