I just rejoined the forum after many years because I need your help..My mom is one of many in our family with HD. I've been caring for her the past 20 years. We made the extremely difficult decision to place her in a NH about 10 years ago. Since then, she has moved several times as the HD progressed and I relocated. She is now 61, and over the past year her condition has deteriorated. She has extreme difficulty communicating, swallowing and without TBZ severe chorea. She is and has been on a combo of meds. The NH where she has been for the past several years has asked me to find alternative placement due to what they describe as her "yelling and crying inconsolably." According to them they can't meet her needs because they can't figure out what she needs. Every NH I've talked to has a waiting list, won't accept people under 65, no medicaid beds or refuses to accept her because "they can't meet her needs." I'm sooo frustrated!! The NH she's in has new administration and DON (again) and their response to her yelling and crying has been to send her to the ER (she had a UTI), require a pysch eval and push med changes, and when she returned to the home put her to bed or keep her isolated from other residents. I figured out on my most recent visit that she has been yelling to communicate that she is in pain due to dental issues! According to the home the behavior (which I have never seen) has been going on for several months and getting progressively worse. I have a care plan meeting with the home this week and will try again to educate them on HD, my mom and how to communicate with her and to remembr that she's not just a HD patient she's a person!
However, I still need to find a new home and am hitting alot of brick walls. Does anyone have a family member or friend in a NH in the Chicagoland area (western suburbs) that they are happy with and would recommend?

If not, any ideas or suggestions for finding a home that will accept someone with HD who has now been labeled "difficult"?

On another note, I am looking for suggestions for communication. The NH won't use a basic communication sheet (with pictures of basic needs, emotions, etc). Their reason my mom can't use it even though the speech therapist demonstrated she could. Makes me want to scream but I'm trying to be positive and think creatively. Are there any tools, tips, etc that have worked for your friends or family??

Thank you for reading my rant and for any thoughts or ideas you can share.

First of all they are required to keep her until a new place is found at least for now. They can't put her out on the street. The fact that they are not meeting her needs really means that they are 'uncomfortable dealing with her needs.' The fact that she is difficult is a fact but you seem to have given them the tools to help deal with her and they are not listening or 'fullfilling' their part of the bargain to medicaid.
This is a universal problem with HD, they really just don't get what is going on and are trying to deal with her as they would with geriatric patients. Going to the psyc ward will accomplish nothing and just cause the state more expense. It might be necessary to place her somewhere in a different state where her needs can be met. There are places which can deal with HD but they are few and far between. Don't give up trying, you just need one good place.
I would first see if you can get her to a really good neurologist who specializes in HD. Insist they transport her to the nearest center of excellence for HD, or at least have their doctor speak with one and get her prescriptions evaluated. They might be able to figure out a new mix of medications which will calm her mind.
I have no answers for you except to say that the suffering people with HD go thru is the worst kind and for all the nurses who are able with training to understand the plight of the phd and provide compassionate care, well, may they be rewarded greatly in this life and the next.

I had a retirement home tell me that because my husband put his foot outside of a window, I had to have round the clock nursing supervision for him. This was a lovely place and cost a lot per month. However, they would leave my husband alone in his room for long periods and let him wander without supervision. He put his foot outside the window because they told him he couldn't call me. So, he wanted to leave. I went looking for another place and ended up going to an adult care home. The lady who runs it knew about Huntington's and told me that if my husband came to live there, she would keep him if he had to go onto Medicaid. Mike went to live there. His last year of life was great. He lived in a home with others suffering from various problems, and the lady who runs the home lives upstairs. There were animals and little grandchildren around, attentive care, and it turned out to be an answer to prayer. Start looking for an adult care home. Go and visit and ask lots of questions. If things don't look right, sound right, or smell right, leave. I live in Washington state, but I know you can find adult care homes in any state. If your Mom is on Medicaid, there are homes who take Medicaid people. Good luck. Linda

A couple of ideas. I found the Church affiliated NH were more caring and careful than non-affiliated ones. My brother was in one afflited witht the Christian Reformed Church. They were very supportive and co-operative, while he was there. However, since he was a high maintainence patient , they decided to not take a futre HD patient. He was not agressive. He was just HD and had a lot of movements and was 52 years old. He required a lot of care and the involuntary movements startled some of the staff. He would also get out of bed at night and startle his roomate. Nevertheless, when necessary, they moved him into a private room. They cared for him very compassionately for a total of six years until he died of pneumonia.

Another thing which helped is that the doctor from our HD clinic talked with their doctor and gave recommendations for medications. So the doctor consultations were helpful. Sometimes you can get a social worker from the HD Center to consult at the NH and that may help. There is also a book by Jimmy Pollard that is called "Hurry up and Wait" which has guidelines for Care and I think there is also another book of guidelines for physicians. It is so sad that nurses don't realize that a urinary tract infection can result in screaming in a patient who has limited verbal skills. So often, a patient's "uncontrollable" behvaior results from pain or a medical conditon, not a psychiatric condition.

The other advantage of a church affiliated NH is they often have more volunteers who come in and help feed aptients, whoch helps lighten the load of overworked staff. I met one of the women who had helped feed my brother when she was a resident at the Christian Home where my mother lived for her last year and a half. (Mom was legally blind and needed help with meals and taking medications. The other woman lived there becasue her husband needed medical supervision.

I just want to say that I'm so sorry for all that your going through! I know how hard it is to find proper placement for a Medicaid patient..the center of excellence would be great, but I know with my dad that we could only find one neurologist in the area that even took Medicaid patients...so I'm not sure COE accepts Medicaid only. Like someone mentioned, maybe a church affiliated NH....and also I feel like the NH if you speak to the admin, should be willing to educate their staff regarding HD and communication needs. I wish you the best and will keep you in my prayers....keep us updated.

She has been seeing the same neurologist from our HD COE for years. Dr. Shannon's great and reviewed the hospital psych Dr.s med change suggestions and approved them. My mom is on a new cocktail as of last week. Unfortunately, the NH's new administration doesn't seem to be willing to educate themselves or their staff about HD. I'm planning to try again this week and regularly try to speak to and educate the C.N.A.'s and nurses that are willing to listen.
Thank you for your thoughts, ideas and prayers. I'll keep trying and will start looking for adult care homes as well as NH's. There has to be a good place willing to care for her. Sometimes I wish I could bring her home and wrap services here..If I can't find something that may be the last resort. Last time she lived with me it didn't end well.. and she definitely needs more care now than she did 10 years ago.
Sometimes it's so hard to know what the right or best option is. I truly wish we had a home in the area that specialized in HD.. maybe someday. The COE metioned the possibility of starting a unit on a former hospital property at one point but so far it hasn't been developed.
I'll let you know what happens. Thanks again for your support. Knowing that there are people who truly understand what we're going through means more than I can express in words.
Over the years, there have been happy and sad periods..this is definitely one of the hardest so far. Feeling all of the emotions as she has lost more and more of her independence, hobbies and life long pleasures and now speech is heartbreaking. Struggling with the sadness and loss of my mom as I've known her is hard enough. Having to constantly fight with the people who are supposed to be there to care for her is icing on a cake that really didn't need any.
Knowing that other people have found great places with people who care gives me hope. I am truly grateful to each of you for shring your experiences.

Bella,

I just want to say I understand your frustration, worry and heartache. I am so sorry you are going through this. The NH social worker needs to find a place that is able to meet your mom's needs...that is not your part, but they would love it if you did it.
Offer to work with them in finding a suitable place for your mom.
Also, sometimes Hospice will go to the NH and be an extra set of hands, eyes and ears. Try contacting hospice and your social worker in the state system.
Sending Hugs {{{Bella}}}

Carla

So, I wanted to give you all an update. I met with the NH last week and there was a little progress. They backed down on requiring me to move her and agreed to get a new communication device. They actually followed up and used my suggestion to have her evaluated by a speech therapist again. The therapist is working on getting her a talking communication board. Progress. As far as care, they deny that the issues I brought up are occurring and I chose not to continue to debate with them any further. I now go into the NH with my phone camcorder on record and will report any issues I see. I've also made the decision to work on bringing her home rather than trying to find a place that will accept her. After talking with friends and family as well as alot of soul searching, we've decided that enabling her to spend as much time as she wants with family is the right choice. Family has always been the most important thing in her life and giving her "us" may well be the best way to bring her comfort and joy (especially when she has such limited access to us in a NH) . I'm planning to look into PACE programs to see if there's one that covers our area and if it would be a good fit for home care. So, hopefully sometime soon I'll be able to say "hi all, she's home, happy, and being well cared for!"

Thank you again for all of your support. I really appreciate your kind words and long distance hugs.