I went to see my husband today only to have an aide tell me that they were doing everything they could to get my husband back home! I said WHAT? that's not even in the game plan. Why do people think that they can make decisions without even talking to me first? I couldn't believe it. I would be so scared to bring him home. They have no idea what the kids and I have been through. My husband is the perfect patient so they have no idea why he cannot come home. Can they make me take him home?

Wow! That is a shock! I'd talk to an administrator, if I were you.

Paula.

Be sure to tell them he is a danger to you and the children.

Stay strong Judy and put your foot down if they try to pressure you. Remember that these type of care places deal with patients and situations every day and sometimes even the best institutions try to make decisions based on other reasons than the health of their patients and the patient's families.

A friend's mother has advanced dementia and can be very violent and aggressive. The home she was in said that a team of their professional carers couldn't deal with her abuse and violence, so they sent her home to be looked after by my friend's dad, who is 80 and not exactly in the best health himself. How is he possibly meant to cope and look after her for 24 hours every day when a young team of professional carers working 8 hour shifts can't?

So don't take what they are trying to do personally. A lot of decisions are made like this that don't make sense to anybody except a bunch of suits looking at numbers around a board room table. Kick up a fuss, don't budge and refuse to let them steamroll you.

Oh I don't blame you for being angry. First of all why would an aide think it was their job to make such a statement?
Talk about out of line. Any kind of discussion along those lines should be between you and the Doctor.

Aides have no business practicing medicine and I'd remind the administration of that.What other types of decisions does this aide make during the course of the day? Do they change medication as they "feel"? In my state nurses aides must be licensed. I would be questioning if this person is licensed.

Stay strong.

Over the years I have had nurse's and aide's say very inappropriate things to me. When serious enough I have demanded an immediate meeting with management. Most times it has turned out that the person who made the remarks was speaking on their own without the backing of their superiors. Perhaps in your case, this aide thought she was being positive in suggesting that your husband might go home someday. She has not experienced what you have and does not understand your particular situation. In any case, call the administrator and ask for a meeting with him/her, the nursing director, and any other pertinent person. If after this meeting, you are not satisfied you can write to the CEO. That usually gets everyone's attention. I've done all these things, but if I did not advocate for my daughter who would? Good luck!

I know that she thought she was doing a nice thing. She knows that my husband misses the kids and talks about coming home all the time. I did explain the circumstances to her and filled her in about last summer. She said well maybe he would be better off in an assisted living facility. Not a good idea in my book. She told me that he does everything on his own. I don't think getting himself dressed and sitting in a chair watching tv all day means that he can take care of himself. I also said that if you have experience with HD (they have another patient with hd right now) then you know it's progressive and he's not getting better. I pushed to get him there because he's 10 min from my house. Any other place is a drive and he would not get the amount of support that he's getting now. I will be making a phone call on Monday and I will set them straight. Didn't they wonder why he was moved there from the other facility instead of going home? He would have gone home if that were possible. I also know she feels bad because he is so young. I tried to make her understand the seriousness of the situation. I have been with this man for 26 years. It was not a decision I took lightly. Even though I knew it was the best for all of us, I cried at the thought and I sometimes still do. I am just shocked that they are doing things behind by back!

Oh Judy,

I'm so sorry for this added distress. I would definitely speak with the administrator, letting her know that you expect your hubby to make his home there.

I am going to my first "care team" meeting on April 6th. I have no idea what happens there, but Tim's facility holds them at least every 3 months and I am a part of that. I will post after that meeting. It has been clear to them from the beginning that we needed Tim to stay there. His HD wing, fortunately, has many younger people, so that is almost the norm.

Judy, be clear about what you expect them to do and not do regarding your husband's care. Educate the staff with info on HD. As Howard said, you must be the advocate for him and also for you and the kids.

Take care hon,

Carla

Over time there are going to be many, many people dealing with both you and your husband in the NH. Each has their own motivation, mood, thoughts, and morals. The key is giving them latitude, don't panic when what they say or do is different than you expect, and take time to explain to either the person or the boss what was said and how it differs with what you are thinking. If you are calm about it, you can get your point across.

In this case, stroke them. Say yes he is doing much better here than at home. The structure here that you supply is what I can't supply at home and he finds that very upsetting and he isn't happy in the environment we at home have. He is content doing what he can do here and having you all making sure his meds are on time... meals and showers are the same day and time, and he is free to choose his activities according to his time clock and not our family's irractic and stressful schedule. The many unsupervised things at home turn out badly and are sometimes dangerous for us in the house... like if he decides to cook... or go out for a walk, or get the sharp knives out of the drawer. These are not choices he has to make here, and this is why he can do so well the things he does do here. You do provide a really great environment for him. If it was possible to recreate it at home I would but that's just not possible.

Something like that.

Yep Judy, what Eric said.

Eric always knows just what to say. I back that post 100%. I can only tell you the guidelines in MA and am not familiar w/any other states. I am sorry that you were so upset Make sure you are checking in w/the admin. people on a regular basis. You're doing a great job Judy!!

I talked to the Social Worker today and it was a scarey conversation. She told me that my husband did not need to be there and also did not need supervision, but then a few minutes later said that she noticed problems with cognition. Really? I said, well maybe because he has HD!!!!
She said, oh yeah! I followed your advice Eric and by the time I was done, I THINK she understood, but I really cannot be sure. I asked her, don't you think that I would have taken him home instead of transferring him to another facility if that were possible? I am going to touch base with her later in the week just in case she forgot our conversation.