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February 28, 2004
What We Don't Talk About
There is one, big elephant in HD's living room that nobody discusses.
If you look through the over 6200 studies and articles related to Huntington's Disease, you'll find virtually no mention.
If you do a search on the web, you probably won't find anything.
If you go through the literature on Huntington's Disease you won't find it.
Yet it is common in our community. Care to guess what it is?
It's spousal abuse of caregivers.
A significant number of caregivers are abused, physically and otherwise, by the person they are trying to take care of.
I know of examples of physical abuse that go back at least three generations in one family. One time when I was with a group of former caregivers the topic came up and many admitted that they had been abused by their spouses.
It's real, it happens, and if you are being abused you are NOT ALONE!
It's time that the doctor's and other health care workers pay attention to this. It's time we provide resources for those in these situations so they'll know what to and/or have someplace to go.
Does abuse happen in every situation? No.
Does it happen in MOST HD caregiving situations? I don't know.
If I had to guess, I'd say it happens in at least 1/3rd of the caregiving situations. Carol Carr isn't the only one this has happened to!
It's time we address this issue in our community. HDSA and other HD support organizations...are you listening?
Posted by Dave at February 28, 2004 11:44 PM
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Comments
You have that right. It works differently. If it's a male spouse with HD, he's toast. If she's the wife, it is a real nightmare.
Ken in PA was on a first name basis with the cops. I was too. My wife is in a NH now, but I didn't get any support whatsoever. They didn't know what to do.
I guess it's to be expected that this happens due to the nature of the disease, but you simply cannot maintain a real life when it happens. It's the end of the normal life, and it doesn't come back until the source of the abuse is removed.
Posted by: Fred at April 22, 2004 03:46 PM
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