Huntington's disease often affects the entire family as well as the individual suffering
with HD. As a caregiver, you will face many challenges—from helping your loved one
manage day-to-day to managing things like household chores and finances. It is important
to realize that the more you know about how Huntington's disease progresses, the better you can provide care
It is also important to realize that being a caregiver has its own set of issues,
from feeling isolated and lonely to feeling overwhelmed. Make sure you don't forget
about your own needs, and take the
time to care for them, too.
Explore our site for information on Xenazine® (tetrabenazine) and chorea associated with Huntington’s disease.
Be sure to also read how
one family copes with the chorea associated with Huntington's disease
while maintaining as much independence as possible.
These 10 tips from the Family Caregivers Alliance can help you and your loved one
better prepare for life with HD:1
1. Determine your starting point.
Talk with family and friends to get a realistic idea of how long symptoms have been
going on, the types of symptoms, etc. This can help determine your loved one's care
now and down the road.
2. Get a thorough understanding of your loved one's condition.
Make sure your loved one is evaluated by a qualified health
care team. This will ensure an early and effective treatment plan based on your loved one's symptoms of HD.
3. Become informed.
Learn all you can about HD from doctors, books, the Internet, health and social
service professionals, and people who know what you're going through. Learn how
Huntington's disease progresses and the level of care that may be required.
4. Know your loved one's needs.
From health care to grooming to safety, it's important to determine what kind of
assistance your loved one will need and want. Reach out to health care professionals
and caregiver centers to find quality care in your area.
5. Have a plan.
Once your loved one's needs are determined, it's time to put a plan into action.
The plan will change over time as your loved one's condition and needs change. Figure
out what you need help with, and recruit family, friends and neighbors.
6. Determine your loved one's financial situation.
To help give your loved one the best care, you need to know his or her financial
assets and liabilities.You may want to seek help from a financial planner or attorney.
7. Have access to legal documents.
Legally binding documents can help ensure you're carrying out your loved one's wishes
regarding everything from financial and health care decisions to burial arrangements.
8. Create a safe home environment.
Be aware of fire hazards, things that can cause falls, dangerous products and sharp
objects. Be sure to have emergency information handy, and watch your loved one's
food and medication intake.
9. Connect with other caregivers.
from other caregivers who know what you're going through. Try local support groups
or connect online.
10. Stay healthy.
Being a caregiver can be stressful. Make sure you get regular check-ups, eat right,
exercise, and take time out for you.
- Family Caregiver Alliance Website: http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392. Accessed on Oct. 2009.