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Huntington's Disease message board, open discussion, and online support group.


Postby LadyB » Tue Sep 13, 2005 6:56 am

I am new to the boards , i found them through searching for Huntington's forum. Not many out there and this doesnt even have any post :( I am hoping more will start posting under this topic.

My father has Huntington's disease, so do 3 of his brothers. I was asked 3 years ago to move home and help my mother take care of my dad. I agreed and my son and i moved into my parents..big shocker after not living with them since i was 16.

I am now taking care of my dad full time, it started out with doing is meds and other thing part time..but seems my mom slowly slacked off on stuff and i do it all for my dad now.

He still can walk and get around..he shakes but it isnt to bad with the meds he is on. He doesnt talk as much anymore and the dementia is setting in more and more each day. I have lots of things i do with him to keep his mind going along with exercising at a slow pace.

Now my mom is starting to get grumpy around him when he cant do stuff for himself or cant remember things, she gets very short with him at times and i am always telling her he cant help it and to please knock it off. I have talked with a few docs about how she acts and i was told spouses tend to act this way when they see their life partner decline, that they cant grasp that they are changing for the worse.

I think she needs counselling for this and she tells me she is fine. Not to sure what to do when she acts like this and hoping i can get some suggestion on how to help her a little better. Also getting some new ideas to help keep my dads brain thinking and going strong as long as i can. Like activities i can do at home with him, games, colors shapes stuff like that.
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Postby cJo » Sat Jun 17, 2006 1:08 am

Hey LadyB~

I know you posted nine months ago but I just found it today. I have HD in my family too.
My mother died with HD at 43 when I was just out of high school. My sister passed also at age 43 in 2002. I cared for her the last 2 1/2 years of her life.

It is a very difficult disease to have in your family. I give you a lot of credit for moving home to help care for him. I know it can get very stressful and heartbreaking to care for someone you love with HD.
I am alone now, all my family is deceased.

How is your father doing now? Mother? It is a great idea to keep your father's mind active, I think doing the same kept my sister more positive and less depressed. I also made sure that she got to continue making her own decisions in her life. It is amazing the things you wouldn't think of. I came to my sisters one day and she was eating something her caregiver had made her that I knew she didn't like. They had just made it with out asking. I then made sure they always asked what she wanted and she should help if she could. I tried to apply this to all aspects of her life. It is hard to remember when "giving care" not to just take over.

There are not many people with HD around but we found Debbie (my sister) a swim class at whe local Y for people with CP. She went two times a week and loved it. She used a "noodle" to hold her up and could walk around because the H2O held her up. She also went to art classes and theraputic horseback riding once a week. Some of this stuff we paid for and some things the did with the help of scolarships or grants.
Well I have much more to say but I will give you a chance I hope you recieve notice of my reply.


I often go to another site that has an HD forum that is a bit more active. www.wemove.org then hit the discussion tab at the top of the page.
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