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Huntington's Disease Caregiving

Advanced Stage
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
HD Guidebooks
Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
Feeding Tube Resources
Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
Personality Issues
Legal Issues
Disability Issues
At Home Care
Outside Care
Caregiver Tips
Caregiver Support
HD Facts
Helpful Forms-Download
Personal Articles/Stories
Miller Messages
HD Links
Fix It-R-Us?
How-To Tips
Have An HD Question?
Beautiful Memories
Caregiver's Chat Room
HD Caregiver Newsletter
Daily Humor & Health News
Dreams & Signs (Fun Stuff)
Share A Link
Send An HD Greeting Card
Location Map
Blank page
Advanced Stage

Stated in positive terms from the person's point-of-view.


"I've quietly resigned myself to needing others to care for me, to sustain me.

I can't show them, but I'm more concerned for the welfare of those around me than I am for myself.  We know we're there for each other."

Advanced Stage

The advanced stages of Huntington's typically involve fewer involuntary movements and experience more rigidity. People in this stage of HD can no longer manage the activities of daily living, and they usually require professional nursing care.

Difficulties with swallowing, communi-ation and weight loss are common.

Choking on food becomes a major concern, as does the weight loss. At this stage people with HD are totally dependent on others for all aspects of care, they can no longer walk, and not able to communicate their needs.

People do not die from HD itself but rather from a complication of the disease, such as choking, pneumonia, heart failure or infection developing from the body's weakened condition. Death generally occurs about 15 to 20 years after onset.
Although cognitive abilities are severely impaired, it is important to remember that the person is generally still aware of his/her environment, remains able to comprehend language, and remains an awareness of loved ones and others.
He/she may continue to enjoy looking at photographs and hearing stories of family and friends.