Many of you know about my situation. I was wondering what your thoughts are about my husband going to an assisted living facility. The Nursing home called again today and are going to set up a meeting about what to do with my husband. They feel that he does not need to be there and are pushing to get him home or into assisted living. I told them that home was NOT an option and I think that it would be dangerous for him to be somewhere other than the NH. I don't understand...every time it seems that things are going well someone has to screw it up. Any thoughts?

Don't let him come home.

At this point I would talk to the ombudsman in the state. Find out what they are allowed to do and not do. Don't let them tell you that. They will lie or or simply not state your rights. Generally you and your husband have them and they don't. It will also show them your seriousness in your feelings. It may not have to be a negotiation with them at all if the rules in the state are on your side.

Judy,

From what I know about assisted living, the supervision he needs would not be there. We all know that at times HD really affects reasoning and judgement resulting in disaster on one level or another. I would stress to the NH that safety is a major concern. Does he cook? Does he manage his money well? How are his personal hygiene activities, does he remember to brush his teeth, take his meds on schedule? Has he had falls? Trouble with the law? Express clearly that the children are and will continue to be affected by his behavior and in order for them to have a satisfying relationship with their father, this living arrangement must be continued uninterrupted. It is also to his benefit to have the order and routine that the NH provides.

When you attend this meeting, take detailed notes, names of who was in attendance, ask them to repeat and clarify anything they tell you. Eric's idea of involving the ombudsman is a good idea.

A Phd that I know was placed in an assisted living arrangement and decided to hire hookers and then had no money to pay for the things he needed. Not saying that is the case with your hubby, just an example.

So sorry this is happening, it wears on you, but stay strong. You can direct his care so that there is a good outcome.

Take care and keep us posted,

Carla

I'm very new to these forums so I apologize if I don't have as much background information as everyone else...
After growing up with a father with HD, I cannot stress enough that it is 100% imperative that you protect your children from the reality of his disease. I eventually cut all contact off from him when I was 13 years old, and even to this day, I am still traumatized by the things that he did to me. I realize now that it was HD that was severely impairing his judgement (which does not totally excuse his actions, of course) but still, I wish that my mother had done the right thing long before I had to do it and kept him away from me. I'm not trying to imply that the situation is the same, only trying to illustrate that even to this day, I don't understand the way that I was treated by my father, and the horrible memories I have of him will stay with me forever.

Can you have him transfered back to the first nursing home? Didn't they witness some of the irrational behavior?
I know it was hard having him so far away but I would take that over the thought of him coming home or going to assisted living.

Its so frustrating. What they don't understand is that once he's home or left to care for himself then he may not take the medication and
the crap hits the fan then everyone is back at square one. Meanwhile you and the kids pay for the stress this whole mess causes.

Hold your ground. Refuse to take him home.

Our meeting is tomorrow and I'm hoping that everything goes well. I am definitely making it clear that he will not be coming home. Violet, I totally understand what you are saying. The main reason why my husband is in the Nursing home is for the safety of my kids. My kids will always come first. Indigo, I have thought about transferring him back to the first nursing home, but that will be a last resort. He will loose his support group if that happens. When he was there he got very few visitors, but they were good to him and it is a possibility.

My husbands brother and sister are going with me and his sister has even written a great letter and has printed some info about HD. It should really help, I hope! I will let you know what happens. Oh, and Eric, that was a great idea about the ombudsman. I will let you know what happens.

Stay strong, Judy. I think a lot of us have had similar experiences. This makes me so angry for you. Your husband is doing well at the nursing home and we are all happy for both of you but the NH thinks that means he needs to leave! Does that make any sense? Do they just want difficult patients? ARGHHHH

The social worker where my late mother in law was first hospitalized for a diagnosis (no one else in the family had HD so we had no idea what was wrong), insisted that there was nothing wrong with her, that perhaps I just wanted to send her to a nursing home so I could steal the valuable antiques she had (she had some Hummels) and said so to all kinds of people. Of course the doctor had diagnosed a neurodegenerative disorder (he wasn't sure which one) and her own attorney had told the court that she was not competent and didn't recognize him even though he had represented her on various matters ( a will, etc.) for years. But no, the social worker was the expert and she thought she was fine. She even called the medical director at the nursing home we had found for her to argue him out of taking her. Fortunately we had sent all records including the MRI which showed significant atrophy so he just asked her what her problem was. Also fortunately, my MIL liked the NH and did very well there.

She was there for five years and all went well until that last year when they hired a new administrator who thought that she required too much care and wanted to find someway to get rid of her. So then the social worker calls and says she hit someone and we will have to come and pick her up. At that point in the disease she was very weak and could not possibly have hurt someone from the advantage point of her wheel chair. We called the ombudsman who looked at the records and attended the meeting and said that my MIL was just as likely to be hit as she was to hit and why were all the residents hitting each other anyway? Weren't they supervised? All such incidents have to be reported so the ombudsman was able to look at the stats and see that my MIL wasn't any more of a problem than anyone else.

Here is the fun part. The social worker actually said to me that my MIL could be arrested for hitting the man who was trying to pull her out of the wheelchair under the impression that it was his. In fact, she name dropped and said that our attorney general would certainly prosecute her if she heard about it. Well I knew the AG very well and I pointed out to her that she had cared for her grandmother with Alzheimer's in her home for eight years. I offered to have Jane call her and tell her that she had no interest in prosecuting little old ladies with Huntington's Disease who didn't want to be shaken out of their wheel chairs. So that was it with the prosecution threats.

I sometimes wonder if people outside the HD community would believe us if we all started telling our stories about how hard it is to get help for our loved ones (and then keep it!).

There are ombudsmen for a reason. A NH will bypass rules if they can get away with it. With most people they can because people don't know what the rules are, and assume that a NH won't risk breaking rules. We had a long article in the paper about NH rules and actually what NH's do to break them. And I am in a conservative state where the rules are not the strictest anyway. The state can only police what they know about, and will with complaints, but there is not enough help to go looking for problems too. It would be nice if there were more oversite so they wouldn't even try, but there isn't. The state does visit, but to make sure treatment is fair and the place is safe. They don't see who moves out or why.

Marsha, even though you knew the prosecutor, a threat like that is so ridiculous that I can't even believe they tried it. I suppose they arrest babies for spitting up on daycare workers too for assault. The jails and juvie are full of 80 year old ladies and baby offenders aren't they? Too bad insulting someones intelligence isn't a crime. I do believe that it is possible to draw attention to the difficulties we have since the paper covered similar ones. Awareness alone though doesn't solve much. On the other hand, there are tools if they get used. A NH may pick on people generally because they can, but they won't mess with the hard target too long. Like most bullies... they will go after the people who will take it, and not the ones who give them a bloody nose for the effort. I think that's how it is with most everything in life though. Car dealers, home repair, lenders, and even doctors. They all will attempt to do the least for the most and some will really stretch that to where it does harm. So you have to have a minimum of self education so you are not defenseless.

The meeting went well. The 3 of us stood our ground and at the end of the meeting the social worker told us that she totally agreed with us and she also felt that he needed to be there. The nurse manager was pushing for assisted living, but didn't have much to say by the time we were done and even the social worker told her that it was not an option. She kept saying that assisted living was in his best interest and my sister in law asked her how taking him away from his family and friends was a benefit to him. She didn't have an answer. I just love it when people who think they know everything are put in their place!

Marsha, I cannot believe that they threatened your MIL! Totally ridiculous! What was the end result? Even though I'm not thrilled with some of the staff, my husband really does seem happy there. He has made some good friends, he's involved in some of the activities and goes to therapy just because he wants to. When he was at home I couldn't get him to do anything. And the best part, the staff love him, so there is no real reason to not want him there. I did feel good when I left. We'll see how long that last's.

I am so relieved, Judy! Whew.

During the meeting in which we were supposedly going to be intimidated into taking my MIL home, the nursing home ombudsman showed up. The NH administrator was taking a day off and the meeting was delayed while she was summoned in because the staff was worried. By the time the ombudsman got finished with them, they backed off and we never had any more problems with them. The actual caring staff was wonderful and that's why we wanted her to stay there. I remember towards the end when she was in sort of a coma and getting agitated I was unable to comfort her. A nurse came in with her medication and spoke softly to her and my MIL calmed down immediately as soon as she heard her voice (she didn't open her eyes). I knew that she associated her with good care and was reassured.

Glad to hear things went well Judy!
I'm worried we're not far down the road in this situation.
Last night I was woken up at 2:30am by two police officers. Talk about scared to death.
Turns out after my hubby woke from his 20 hour nap he decided to call 911 and tell them
that the police do not have medical POA over him and they can no longer come to our house (?).
Of course they came. Since I had met with the police chief last summer they knew about the HD and came
in to check on me.
After the police left I noticed his legs bouncing really bad. I made sure he took his meds and tried to go back to sleep
but it was useless. This morning his legs were still bouncing even with the meds in him.
My 83yr old dad told me today he thinks its time to get him on the list for the VA home.
I guess its time to go speak with them and find out what is involved.
If he catches wind of it, he'll go off the deep end so I'm not looking forward to this.

Good for you Judy! It is most difficult to stand strong during times like these, but it gets easier. While I recognize that NH's are under some stress, the way the administrations often behave is absolutely absurd. I've mentioned before that I do crisis work and have come across many situations where NH's have abandoned patients for far less than what is mentioned above. In MA, patient abandonment is illegal- and I find it disgusting considering how much f**** money they make off everyone. I do not know what is wrong with people. Anyway, I'm so glad it went your way, just sorry that it caused so much more unnecessary stress on you. Stay strong

Apologies for the language.

Three cheers for Judy, you did awesome!!!



Edited 2 time(s). Last edit at 04/13/2011 03:00AM by Barb.

Judy,

I am so glad that the meeting went so well.

Paula

Judy,
So happy that this hurdle is behind you, now you can get into a routine with him that will be good for all of you. Enjoy this small victory! You did great!

Take care,

Carla

Great job Judy - I am so glad the meeting went well. Such a ridiculous situation - everything is going well on all sides and they decide lets shake up this delicate balance for the well-being of the content patient... uneccesary stress for everyone involved. I am so glad it worked out in the end!

Thanks everyone! I feel so much better with this behind me, for the time being anyway. I'm sure it's just the first of many obstacles.

I don't like being told how to live, but I need some help. To what extent can I retain my autonomy in an assisted living environment?


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