i just told my daughter her dad has hd. she is 19. the situation isnt good my husband wants a divorce after 20 years of marriage . he was diagnosed 4 years ago symptoms were much longer. i cant do this anymore its not healthy for my children but he cant be by himself he thinks he can. can i get him into a nursing home without his consent . im lost my daughter need to talk to someone and i dont know where to begin any suggestions i didnt want to tell her but my husbands lastes rampage he told her some mean things and she had a lot of questions it was always known he had a neurological problem im sorry im not making much sense but it helps to write it all out thank you

I've seen a couple of your posts, and just didn't know what to say. I say go ahead with the divorce. IF you BOTH are in agreement, and can AGREE on dispursements without involvement of inlaws .. you can do it cheaply as I did by going to www.legalzoom.com Joe and I knew we needed to divorce but could not afford to each have a lawyer and we both agreed on details and our kids were over 18.

NOW.. about his care. He may be okay for a while alone, but I think you should keep calling adult protection services and any other agency to keep an eye on him. Try to stay in his life even long distance. You kids definately should try counceling if they agree. Hey, BIRTH CONTROL for your kids.. None of us like to think our babies are having sex, but think back dear ...... and accidents do happen, so make sure they also understand their at risk status. sorry to be so blunt but this is reality.

can i ask where you live?

I don't have any good advice for you, but want to give you (((HUGS))) other than agreeing with counselling for the kids.

I'm sure others will have better advice; I have read of all-too-similar situations on this forum, even though my family has not (yet) seen a situation like this.

Do you have a local support group, or HDSA chapter that might have a social worker who can advise you a little bit?

thank you everybody and i will look into a local chapter i also live near my parents 2 miles so i can stay with them . i live in delaware county pa his parents have past away he has no one my dad said not to make any big decisions right now stay with them but i cant go back im going to call a lawyer my work has services i can go through but im scared cause i know he will apologize and act like evereything ok every month he wants a divorce but never to this extent if im making sense i dont think i am ill be back thank you again i would be lost without this site ill say prayers for everyone that has to visit this site

Does your husband have any family that can help him transition to a life on his own (give you a break)? Aside from feeling that he cannot cope on his own do you want a divorce? Such a difficult position for you! I agree that your daughter needs help to cope with the double whammy of her dad having HD AND being at risk (does she get that part of it yet?)

I have seen a few posts of people who are not married anymore but still help their HD+ X's.

I wish I had more helpful advice. Just keep looking here and posting questions because there are many folks with experience in every situation that will post and give you worthwhile advice.

Good luck!!

jendoc6262,

I hate to be blunt, but you have to insure that you are safe and taken care of FIRST, then you can worry about your husband.

Just like the airplane demo before a flight, get your air mask on before you attempt to put on someone else's.

Try do deal with this one step at a time. Don't overwhelm yourself. First, get you and your children safe.

When you do step one, step two should be a lot more obvious.

Are you sure it's not just the HD talking when he threatens divorce??? It just seems so sad to me that after 20 years of marriage you leave when he needs you more now then ever....I'm sorry for all you are going through...i am also a caregiver to my husband who has totally changed because of HD....but i think of the vows i said on my wedding day...for better or worse, in sickness and in health, for richer or poorer, until death do us part....and most of us here who are caregivers have experienced the worse, sickness and poorer part of these wedding vows all at one time and for many years....being truly committed leaves no other option but to stand by the one who is now very sick and needs us all so much...I would never encourage someone to get a divorce...and i hope when days are so stressful that all would encourage us to stay true to our vows and to do all we can to make life for our phd the best we can...Nila

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.

I agree with a lot of what you are saying Eric. When my husband and I said our wedding vows ( it will be 20 years on June 2nd) I meant every word and planned on staying married forever...But, I was not counting on being verbally and physically abused. I don't think that I should have to stay in a marriage that causes so much distress for my kids and I. What I think will happen though, is that my husband will go into a facility fairly soon and we will PROBABLY stay married. If I'm not able to get him in somewhere, the divorce may happen!

I've had people tell me that I should follow my marriage vows and the funny thing this some of them ARE divorced themselves! Makes no sense to me!

thank you everybody for their advice . if it was just me involved id stay i can handle it but its the children they need to get away and get help . hes now telling me i abandond him when he told me to leave. it is the hd causing him to treat us this way 1 day divorce next day marriage couns and tahn divorce i have to go get my daughters stuff because my husband is locking us out

In a lot of circumstances, you can better protect the spouse by not being married.

The spouse can quickly qualify for Medicade and other state services that you otherwise would have to spend down to.

Sad, but true.

And being single, doctors take a lot more of the care decisions. If you are together, the doctors and "authorities" can push the responsiblity onto you, and try and shame you into taking care of someone they can't deal with.

If he's on his own, it also releases you from a lot of liablitiy issues you haven't even seen. For instance, if you are the designated "caregiver" and he gets hurt or killed due to his disease, it isn't inconcieveable that the adult protective services or some other agency won't blame YOU for the mishap. And if he should become involved in an accident where people are hurt or worse, that can be very sticky legally.

Right now, give him some distance. Once you can prove he's a danger to himself or others, then you can work through the system and make sure he is taken care of by professionals.

thanks everyone for all the support . i am going to a chapter office tomorrow . im just having a hard time what to do next .its so hard to keep everyone happy but my girls come first thanks again jen

Good luck, Jen. There are a lot of people thinking about you and your family.

That brings up the subject of power of attorney. Stanley and I have discussed this, and he is in agreement, but I keep putting it off. I feel like if I do it, then I am letting HD have the control. On the other hand, I know I need to do it now before Stanley becomes less agreeable.

Yes you do. And while you can still prove he is capable of signing on his own.

Please try and have the lawyer explain to you EVERYTHING about that POA in detail. Know the rules well enough that you can explain it to someone else!

Make sure you get FULL POA for both legal property and all medical decisions.

well todays a new today im stil at parents with the girls. after another lovely week of shawn divorcing me tell me im worthless i abandoned him he agreed to increas his meds see a therapist and stop divorce preceedings yea for me he apologize also which is hugh 2 times in 20 years. im not ready to go back because of the girls an i need to get myself together to help him . i was very positive on the phone with him today and thank him for doing what he can . i will start looking into poa on monday will shawn have to sign it because he prob wont his money is his money not mine a wife of 20 years ahhhhhhhhhhhhhh ok ill stop thanks
pray for a cure jen

You have to help yourself and get in a place where you can help others. Otherwise, you both can lose. Nobody ever wants that.