Nila I know what you are saying. I didn't divorce but I have encouraged people to leave. Whether there is a legal divorce or not there are some situations that are simply intolerable. Many make it through the entire disease with their spouses but there are others who can't and shouldn't. There are limits to the amount of behaviors a person can or should tolerate regardless of vows. Personally, I think I put vows ahead of my children, who had made no vows, and they were often times more at risk of Teresa's behaviors than I was. It's not that the person isn't loved, but sometimes the risk of harm is too great. Not just physical harm, but also financial and emotional harm.
There are also frames of mind of care givers, spouse or not, that can't see the forest for the trees, and are certain they are the best and only care giver without considering they may not be. They will nearly martyr themselves which isn't always necessary. There just isn't a pat answer that says always do this or never do that. I have been told that placing Teresa in a nursing home, along with anyone else who did the same, was incorrect. That I was not a stand up guy. Fortunately I was secure enough in my thinking to do what I felt was was best for her and myself and mostly for my children. The person who said this certainly felt he was one great person and complimenting himself by criticizing me. Nothing like what you, Nila, are meaning to do. I know that for certain. There are people though who did split, and I have seen first hand where the person with HD was actually more content. I think Teresa's sister who was divorced, in some ways was better off for being divorced than Teresa was being married at home. Teresa had better over site, and was physically safer at times, but not always happier. Had I had better mentoring, I would have handled things better. But very few people have great mentoring. Most of the "best" care givers I have seen muddled thought it the same way as people who had to distance themselves. The only difference was luck of the draw as to how HD progressed, and how behaviors happened and in what order and what period in their lives HD occurred.
And even though I have remained married, I wrestled with my vows... and I have decided that vows they are a something a couple takes together, and if they can't be fulfilled together, then a person is free to decide the contract they entered into has been broken to the point where it is meaningless in spirit. I think sometimes it is broken that badly. It has a purpose depending on how it was taken to begin with. Was there love, honor and cherish in there? Obey? If you take the "obey" vow, do you do as a person with HD requests? Not every religion has the same vows... and most but the very very strictest has "out" clauses implied or granted. So your vows and my vows may not have been the same vows... or taken with identical intent or requirements. So while my vows may have built in wiggle room, someone else's may not. In that case, even if I feel a person or a couple in an HD dominated marriage, which may include many abhorrent behaviors, might be better off split, I have have to respect their decision to stay. I may not agree or understand it... but it's not for me to decide in the context of their own life. They may be miserable in the marriage, but most miserable out of it.
This is why a very comprehensive carers hand book is not written. While we can advise on medication, swallowing, and balance and chorea, handling the couple of decades of HD care in the emotional sense is very difficult. It's why so many people look here for emotional guidance. They have individual circumstances and need some tailor made advice, and almost need psychological advice, when you weigh in the emotional needs of the sufferer, the career, children and so forth. In some cases they need religious advice as well. And what works for me, may not work for you. That's why so many people return here almost daily. They have to adapt constantly, and rethink, reanalyze, and stitch together care plans that work so HD is manageable in their lives. And the fact is a certain set of circumstances is not manageable. I wish it always was.. and for every problem there was a pat answer, or way of thinking that makes everything better. But it's just not so.
Nila, I know for certain you were meaning to encourage Jen... and it may have been exactly what she wanted and needed to hear. I am not saying you are "wrong" or you gave a poor opinion. Yours may be more well suited to her than mine was.. it's just me giving choices in thinking that's different than that one. I can't tell what is better in Jen's case.
Edited 1 time(s). Last edit at 05/28/2010 08:03AM by Eric.