1. "Do it alone."
You really don't need help from friends, family, and other caregivers.2. Don't pursue your own activities.
Your whole life should revolve around concentrating in the illness. And never do anything silly, just for yourself -- you might forget, for just a moment, the horrible situation the illness placed you and your loved ones in.3. Forget about planning time for yourself alone or with others.
If you leave your "patient" alone or in someone else's care for a few hours, who knows what might happen?4. Don't set limits on care giving activities.
This is a 24 hour, 7 day a week job. In order to do it right, you need to respond to every request, right away!5. Spend holidays alone with the person with HD.
Better yet, arrange a stressful holiday gathering with as many activities as possible, to prove that the person with HD is "the same as he or she ever was."6. Engrave your plans in stone.
It's much better to "forget the whole thing" than to remain flexible and risk having an alternative good time. If the person with HD can't fully participate, he or she should just sit the whole thing out.7. It's a waste of time to plan low energy recreation just for one person.
Better to force him or her to participate as everyone else does. Constant failure will reinforce the depressed outlook we are trying so hard to maintain.8. Finally, never laugh about anything connected with the illness.
This is a serious topic. There is no humor in adversity.
Created and maintained by Renette Davis. Send comments to her by clicking here.
Created: Jan. 27, 2000
Last updated: Dec. 6, 2010