Marsha, this highlights the crap we have for doctors. I mean to suggest she doesn't have it shows their ignorance.

Apparently they have never seen it.

I noticed a lot of the nurses really took it personally when Lisa would go off. They would be nice at first, then they would start saying "she knows what's she's saying" and "she picks her battles" trying to make it out like it was deliberate and calculated.

They would also comment on how unhappy she looked and how she rarely smiled. That's par for the course too. After a while they took it personally.

To some extent, they may have been right. But Lisa wasn't without her charms (after all, I married her). But the disease made her lose her expressions, and changed her natural body language.

And I was shocked at how doctors, particularly psychologists, didn't understand the disease process. It takes a neurologist to sort it out in the US.

Try this, write a letter to the judge in her case and the prosecutor and tell them what they are missing.

Can't we all help Marsha with this problem? Who is in CO right now? Can we at least give her some options and help her draft this letter?

Fred - I am working with some people in CO and hope to hear something tomorrow. I sent bits and pieces of what has been going on to them as well as info on HD.

Hopefully they will be able to give some ideas or get some help.



Stacy-NJ

Anybody at least know Heather's last name?
Laura

edit please



Edited 2 time(s). Last edit at 03/04/2007 05:11AM by Maggie.

Thank you all so much!!!!!!!!!!!! You will never know what this means to me.

I contacted the ACLU Around the 1st of Dec. They could not help me, but gave me some names of attorneys. It is how I ended up with the attorney I hired.

Her name is Heather Ann Brandt and she is in Colorado Springs. Case # 06cr4001

Laura I recieved your pm and will respond.

Competency hearing was today and again they set new court date for May 1

Thanks so much.

Maggie I will e-mail you. Thank you
Thank you Fred. Thank you Stacy

Marsha,
My daughter in-law is also an attorney. As I said in a previous post she and my son lived in Denver for about 13 years and she practiced law there. She does mainly corporate law, but I am sure she knows some other attorneys who might be able to help. She and my son were also very active in the Denver Support and the HD convention when it was held in Colorado. I will keep checking to see if Maggie's daughter in-law is successful or she needs any names etc. I should have thought of this sooner but my daughter has been very ill and is have cat scans and sleep study Friday and Saturday and honestly it is this time of night before I can get on the computer and by the next day I don't think of it with all that is going on with her. She is very advanced and I don't know what is wrong maybe progression but we are checking for other possibilites. My heart goes out to you and Heather.

Gosh Al, thank you for taking the time-and with all you have going on. Bless you. I just wrote to Maggie, then did something dumb on the computer and lost it! So I will write it again. I have written the advocacy center there, and they were not able to help at that time but it has been a few months.

I am sorry to hear about your daughter. Is the sleep study for suspected sleep apnea? I sure hope everything goes well, and that you are getting enough rest. Bless you.

Thanks, Al,
Leslie would be grateful for your daughter-in-law's input. She would be working blind as far as the system in CO goes. Maggie

This may sound sort of simplistic but couldn't we all start a letter writing campaign to the judge and the prosecuter in the case and make sure that the local paper knows about it? There are so many of us who are on this site Maybe a deluge of letters would shake things up a bit.

Just a thought

FranJ

Franj, I thought of that but did not want to suggest it, being that so many on here already have so much on thier plate. Thanks, Franj

Marsha, i would love to do that, i would love to help. I just need to be able to follow, need someone to create an idea for a letter, something i can follow, who to send it to etc, but we all love to help you marsha so much. Im just worried though, dont want to make a judge angry. Im thinking you should wait on some of the good legal advice you are about to get, and see what the legal advisors think, if they think going to media or writing letters would be helpful, or if it might make the judge angry, or if it looks like a protest it might cause harm, but maybe a few expert letters from just a few people here, maybe that would be better.



Edited 1 time(s). Last edit at 03/02/2007 01:13PM by Barb.

The letter is nice, but big old TV cameras in their faces usually makes them want to resolve the issue.

How about "COLORADO HEALTHCARE SYSTEM BROKEN"

or "YOUNG WOMAN HELD IN LIMBO DUE TO BRAIN ILLNESS"

or "COLORADO OFFICALS CLUELESS ON YOUNG WOMAN'S FATE"

Do the cameras in the face when these people that bouncing heather around. Greet them in the AM when they go to pick the paper or take out their trash.

That should give them pause, dontchathink?

your right fred, the public doesnt get to see the letters, but they do get to watch the news.

I would of course be happy to contribute in any way I can. Letter campaign - whatever!

MARSHA,
I am just now having a chance to get back online. I will get intouch with my daughter-in-law tomorrow and find out who she knows who may help. Actually she and my son are getting a divorce but we still are close and talk several times a week. Michelle had her sleep study last night. Slept better than usual!! She had the sleep study because she has had terrible sleep problems for several years. Her neuro would not prescribe anything for sleep until he had a better idea of what is causing her problem, such as is she getting into a deep sleep or not. It is not sleep apnea. For awhile she could not get to sleep for hours and now it is like she is having nightmares and fighting in her sleep. She is taking Zannaflex for stiffness, and that has helped her getting to sleep but she still fights or has nightmares. We have gone to other sleep disorder clinics and they told us they would not be able to help because they would be unable to tell what was her chorea, etc. But I have kept trying and finally one was opened here at home and they did the study.
A few months ago some of the home health aides who do her personal care complained that she is to difficult for one person to do alone so the administrator called me and told me I would have to help with transfers,dressing etc. I have always helped when if they needed help, mainly because I don't want her hurt. Some of them do not know how to do transfers and do not take time with their paitients. Now they say another aide has complained and there are tow many transfers and they are coming tomorrow morning to tell me how everything has to be done. Some of the things they want us to do are not good for Michelle and changes in routine cause her to get upset and start screaming. They sent out their PT a few months ago who told them everything was fine and that it was the aides not doing things correctly. I am concerned they are trying to drop her a a patient because she takes more time than some, although they have other patients who takes as much time. I am 66 and I can no longer do it by myself. They also own the day healthcare she attends so I am concerned about what is going to happen.

Al, there isn't anything you can really do about it. It isn't like they will call you and tell you to pick her up.

You can't take care of her, and they have to find someone who will. I hope that where ever you live that they don't dump patients out on the streets like they do in Los Angeles.

If they can't find a place for her they agreed to keep her. That should count for something.

If you get a sense that they are going to do that, you just keep repeating OVER and OVER " I can't take care of her anymore" and you don't.

If they suspect for a second you will, they will be more inclined to dump her than they would if you maintain you cannot help any longer.

Al, it sounds like the Physical therapist needs to come back out and re-teach transfers. I used to work in home health. And there are always a way to do personal care. There are a certain amount of in-services required for every person to attend and the professionals (OT, PT, RN) are required to teach so many a year. Maybe you could call the PT and suggest she/he do an in-service in your home.

Also, hoyer lifts can come in real handy in some situations. But we NEVER denied care to someone for Suggest 2 people to come in-then they can get it done in 1/2 the time.That's why you have them. If you didn't need them for that stuff you would not have them comming in!

I suppose I may be the one who is over reacting! Michelle only goes to a day healthcare for either 3 or 6 hours a day. She is at home with me the rest of the time and I want to keep her at home. They came out today and their was no mention of teaching me how to do transfers, which I already know how to do and have been doing. They wanted to change the procedure for her care and this really upsets her and she starts screaming because that is they only way she can commnicate now and I think they take it that she is being difficult but she is just confused and scared about the changes. Instead of putting her immediately from the shower chair (we have a roll in shower) to the wheel chair to dress her (I help with all of this) they have decided that she should stay in the shower chair which has a hard bottom and rubs her bottom until it is red and also her back until she is hurting and uncomfortable. We have another shower chair that they ordered last year for us and it is to big and bulky so they also don't like to use it. I told them if they insist on her staying in the shower chair they will have to use the more comfortable one for her. The aide said today that was more difficult than the other way. It is the week end aides who are complaining that she is to hard to transfer and do etc. They come about every two months on a rotating basis and instead of thinking about her comfort they want us to change to suit them. Her regular aides who come during the week say they have no problem (at least to my face). If I don't let them make this change they said all they would only do a bed bath. She has always been very concerned about her personal care and how she looked and I have made sure that she feels good about how she looks now. Also, since she goes out to day health care, to church and occasionally a movie wtc. I don't think a bed bath is enough. I even offered today to buy a new shower chair. Oh well, we will see what tomorrow brings.

Marsha, My daughter-in-law has not returned my call or my email as of yet. I will let you know asap.

Thanks for your input!

Al,

I think that maybe it might be good if you print out the manual in the Library about Care of Advanced HD patients. This might answer some misconceptions her caregivers have about HD.

You can tell them what you want. Waiting for them to take some initiative might leave you in the dark for a very, very, long time. To be proactive with her care, you have to be armed with information not only for yourself, but for the caregivers she has now.

It's not unusual for these types of caregivers to make their job as simple as they can. If these changes are interfering with you, then you need to tell them what is and is not acceptable to you in no uncertain terms.

And you might want to investigate some care facilities around you also. There may come a time when you need to take care of yourself. So you need to know what's available in the area.

You can think of it as "Plan B". You may need it with all the stress on you Al. At least have a good idea what would happen if god forbid, something happened to you.

That's being "proactive".

Hi,
I hate showers, it is the time when I am victim to water falling on my skin, I caanot walk in the rain or wind because it is too much sensation. The shower doubles this because you have no clothes and when the shower starts my skin gets riled up until the temp gets perfect. Even with perfect temp, I still have all these bizarre sensation from the water. In my last home, on the OTs recommendation I had grab bars and a shower chair. The bath was just too short for my leg so bathing was out of the question. Using a shower chair is stable, but in this new place, I have a bath tub which is just long enough, and have no intention of putting the shower chair back.
It is also very important to have a ridiculous warm bathroom. I also use a terry gown afterthe towel because I am loosing body heat.
DUsty