Tomorrow I have another meeting at the nursing home. This time they are insisting that my husband be present. I feel like I'm going in front of a firing squad. They plan to have many people there, including the administrator, ombudsman, social worker and whoever else they can think of to get involved. I swear, they are some of the dumbest people I've ever met. The social worker told me today that they cannot hold my husband if he wants to leave. I have a call into the state health dept. hopefully I will be able to talk to someone in time.

I had a long talk with my husband tonight. I told him about the meeting (he already knew) and explained to him my reasons for not bringing him home. He really seemed ok with what I said. I told him that tomorrow when they suggest I bring him home that the answer would be no. I also said that I was not doing this to hurt him. I want what is best for him and us. I pointed out all the pro's of being where he is and really tried to convince him that he should tell them that he wants to stay where he is. He was having a hard time remembering some of the things we discussed, so who knows he may just keep insisting that he wants to go home, but it was worth a try.

Well maybe he was telling them before that he wanted to come home, because he might of thought that was still an option? But now that he knows it isn't, hopefully that will help. So sorry for what you're going through. Can you tell them that you guys are separated? And for that reason he cannot go home, but would have to go into assisted living, and he would not be able to do that? I can't remember if you both actually separated or not. Gosh i wish you luck tomorrow, but stand your ground, and say you are not able, and not willing, to take care of him.

Thanks Barb! No we are not separated. I'm not sure that I could get away with telling them that because he would say, no were not and his brother and sister might also be there. I will definitely stand my ground.

Yes, i just wasnt sure if you had separated or not. Yes, stand your ground for sure. They know that they can't send him home if you say no, i can't take care of him. Geez, good luck

Good luck Judy! I'll be thinking of you and please let us know how it goes. Honestly, I wish you were in MA, I would intrude and go too These places are so full of s**t, it's unbelievable. . I don't care if they don't know about HD- then they need to learn and fast. That's what the rest of us do. Good luck again. I'll send good thoughts your way.

Yes, good luck. So what do his brother & sister think? I hope you have someone "on your side" at the meeting too. But even if not, it sounds like you're a very strong woman with some great reasoning about this.

Good luck Judy - this shouldn't have to be such a hard battle ... over and over!

Hoping all goes well for you Judy.

Carla

Good Luck Judy!
What does his Dr. say? Am wondering why, after all you've been through, his Dr would ok him going home?
What a mess.
Anyway I hope things go well.

Ok, so this is how it went. The administrator said your husband wants to go home, is that an option? I said No!, he asked why and I explained about all of the physical and verbal abuse. He said, well what happens at home is of no concern to me. I said what, are you kidding me?!!!! I almost lost it. I said that my kids safety is my #1 priority. He told me that it was awful that I would expect him to live in a NH for the rest of his life.

After a much heated discussion, we all agreed that we could try getting him into the transitional waver program. He would get an apartment and nurses or aides would come to make sure he is fed and give him meds . I'm not sure what else. Supposedly medicaid pays for everything. (I was told by the State that I couldn't stop them from doing this) After the meeting the social worker told me that she felt he was better off at the NH and that when he was at the other NH they tried to get him in this program and he was denied so she is pretty sure that he will be again. I'm not sure why she didn't bring any of this up at the meeting. She also said that we have to at least try. If I understood correctly, if he is denied then they should get off my case because it will prove that he is not able to live without supervision.

His brother was there which really helped. He backed up everything I said. He told them about all the times he had to intervene and how bad things were, so at least they know I'm not lying. I also did my research before I went. I even called the NYS health dept. and had detailed notes about what was said, so I knew my rights. They were a bit surprised. I know they thought that by having my husband there that I wouldn't have the guts to say what I did, but they were wrong! There is no way in hell that I will let them walk all over me, they have met their match! Sorry this is sooo long, I was on a roll. lol

I almost forgot. The social worker told me that I must feel awful knowing that my life is over! Really, it is? Amazing!

Wow Judy, sounds like you really nailed them today, good for you! How did your husband do in all this, did they ask him if he wanted to come home? I still can't believe they did all this in front of him, it took guts for you to do it. And what's with that guy saying, ok he abused you, is that any reason for him to spend his life in a nursing home? Doesnt he get it? I guess not. He thinks its just a marital problem and not a frigin disease it sounds like. And you know, if they do try him in assisted living, make sure you don't help him out in any way. Don't check his mail for him, or if he says i don't know what to do, i have to phone the bank, can you phone the bank for me, etc etc, just tell him, well it was nice to visit with you, make sure you tell your home nurse that you need help with your banking, etc etc. Geez huh. Oh, and that took real guts for his family to side with you too, right in front of him, you must be just running on adrenalin right now, but you did good



Edited 1 time(s). Last edit at 06/17/2011 10:54PM by Barb.

I am so proud of you, Judy! You knew your rights and you stood your ground. What a manipulative bunch of idiots they are! We are HD families, we've been through more than those people will ever know, and we cannot be guilted into making poor decisions.

Life over? She must be young. That's not even close to reality. It doesn't occur to her that you have milestones in your children's life to look forward to, that you will grow in your career and have some successes, you'll discover new interests and hobbies and that you will eventually fall in love again? Life isn't even over for your husband either. There are still things for him to enjoy even in a nursing home and things for him to look forward to. My mother in law was in her seventies, had HD, and was in a nursing home for five years before she died and she was never happier in her life. Having the routine of the nursing home reduced stress for her, she was finally on good medication, and her family and boyfriend visited regularly. She even made new friends at the local pizza parlor where she went for lunch with her boyfriend three times per week. Life is not over until it's over (and not even then in my personal belief).

Judy,


Your life really is not over. I reacted as Marsha did. I do not like that comment and the person has not walked a mile in our shoes. We take what we have and move on, make choices, etc. Yes, we have hardships, but life is not over. There's plenty to enjoy.


Dave

Good for you, Judy. I'm so pleased that you stood your ground and also very pleased that your brother in law was there backing you up. It's impossible to educate everyone - even health care workers - on Huntington's, so sometimes you just have to put your foot down and refuse to budge. I also agree with Marsha that you might very well be fighting for the best option for your husband too.

Marsha or Judy,
My husband is (hopefully) keeping his appt. at the HD clinic in Houston on Monday, the 20th. He wouldn't tell me anything else except he had this appt. I did some research and found out the doctor's name he'll see. I talked with a nurse who is a manager in the neurological dept. and told her I was sending a detailed letter as to his behavior and how HD has manifested itself for 5+ yrs. and has gotten worse, which just caused him to lose his job. She assured me the doctor will see it and it will go in his file. I've lived long enough to know things can get misplaced, doctors can be too busy to read 'extra' notes that are added to a patient's file, etc etc.

I am separated from Steve, but am still his wife & we have four young girls. What legal rights do I have to talk with the doctor or anyone else at the clinic or what do I need to do to get these rights. (I saw that Judy was able to speak up on her husband's behalf... Although I'm not sure what hoops had to be jumped through even to get her husband into the facility in the first place) I need as much information as I can about Steve's HD evaluation, because it has become very clear that Steve is unable (and in denial about HD) to discuss logically and with a good analytical mind what got him fired from work. He cannot represent himself very well when it comes to bringing forth the necessary details and even being able to be objective, plus his perspective is off. Well, you all know what HD does.... He's gone to two attnys, who do not understand HD, took his money (200+), and told him basically, people get fired everyday! Steve wouldn't even give me the attny's fax no. so I could fax info on HD. He wouldn't give me the attny's phone number, because he thought I would say "bad things about him". I tried to tell him we have to work together and deal with this Petroleum Co. strategically. He told me "my opinions have no value" and that "we can't work together." (My fault of course! In his eyes!) I've researched the disease on and off for 6 years! He use to want help in dealing with the fact he had the defective gene. Now he has gone into a state of denial and his personality, became abusive, depressed, hostile (big time) and a plethora of other HD symptoms. He's never gone on meds., and I'm not sure he will stay on them even if the doc writes prescriptions. I am still in the midst of trying to find a competent attny. who deals with labor laws.

This sounds unreal.....but I thought I found a great attny who is on the board of a clinic dealing with HD, he also noted on his website an award received from the HD Society!! His secretary said he was interested in having me send an email with details and if he couldn't help he would steer me in the right direction. At last I felt hopeful.... My hopes dashed when another secretary at the law firm sent an email to me saying they represent the very oil company that fired Steve!!! That Mr. G "knows nothing about HD" and got he award due to some connection with a friend!!! (Yet posts this on the web/ad)!!!! I think you can imagine my shock on both accounts. On the plus side, I don't know how many law firms the oil co. has to represent them, but due to me disclosing personal details on Steve, this law firm cannot legally represent Tesoro now. And I intend, if I can find the time, to contact the HD Society or law firm and tell them it is deceiving to have this attny noting on his web pg. he has an award from the HDSA, when he knows nothing of the disease and somehow got it through a friend. I don't even understand this!!!!

Theresa

Way to go Judy...I'm proud of you! It makes my blood boil when I've heard what you've had to go through and how misguided the N.H. people are. They seem clueless. You are doing the best thing for your husband, your family and yourself. Good luck!

Thanks everyone for all the support. It really means a lot! It's so hard to stay strong sometimes when you have a bunch of people telling you that what you are doing is wrong. I was told by the social worker that it didn't matter what his doctor says, that it's their decision. I'm over it though, I refuse to let them get to me. I've never really thought that my life was over, just that certain things are on hold for now. My kids are my life and marsha, you are absolutely right there are many things to look forward to.

Theresa,

The only reason why I'm able to make decision's on my husbands behalf is because I have power of attorney and he has given me permission (in writing) to make decisions for him. Any time we went to a Doctor's appointment I had him fill out papers saying that they could give me information. As for the nursing home, in November my husband went into the hospital for 2 weeks and they thought he needed nursing home care so they had him transferred to one. Unfortunately, sometimes something has to happen in order for some of us to get help. Most everyone here knows what my kids and I have been through and until my husband had a medication reaction none of the doctor's would help me or him. Not until they were forced to. I was lucky enough to have some great people guide me and tell me what to do.

None of this surprises me. It was a setup. It's pretty simple really. The NH wanted him out. They don't care where he goes, as long as it isn't in their facility. They are not dumb, they are protecting their interests and are acting dumb.

The state won't let them release him just yet, and has to have your buy in to let him go, because obviously a doctor isn't telling them he's "ok" to go home. If he was "ok" to leave, they would have just opened the door and let him out. Believe me, they have already asked and were refused. They can't find a doctor to get rid of your Power of Attorney, which, if it's like mine, only is valid if the person isn't capable. See what they did? They lied to you and said they "can't " hold him. BS. If they can't hold him, then what is he doing there??

The state is trying to see what they have to do to, and they were hoping nothing. They have no desire to place this man, and hoped that you would somehow break down and just take him home. The NH doesn't care. I had my wife dumped in the ER by the NH and that was that. They called me for a "conference" at the ER, got me to go, and left before I got there. They gave instructions to the ER nurse that they cannot return her to their facility. They wouldn't return my phone calls. I had to get into their office to get them to give me their two face excuses.