Tips for HD Chorea Caregivers
Individual results may vary. Xenazine may not be effective in reducing choreic movements in all HD patients. Please review the Important Safety Information, including Boxed Warning about the increased risk of depression and suicidality, below.
Sue and Jeff’s Story
Sue and Jeff share their experiences living with Huntington’s disease, from their initial reactions to her diagnosis to working with their doctor to find treatment for her HD chorea symptoms.
Caregivers Discuss Considering HD Chorea Treatment
Considering treatment for chorea associated with Huntington’s disease? Hear from caregivers about considering HD chorea treatment
As a caregiver, you will face many challenges — from helping your loved one manage day to day to taking charge of household chores and finances. These tips from Family Caregiver Alliance are offered to help you coordinate the needs of your loved one during this critical time. Family Caregiver Alliance is a nonprofit organization that addresses the needs of caregivers providing long-term care at home.
These 10 tips can help caregivers:2
- 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.
- Get a thorough understanding of your loved one’s condition
Make sure your loved one is evaluated by a qualified healthcare team. This will ensure an early and effective treatment plan based on your loved one’s symptoms of HD. Talk with your doctor about any concerns you have and become an advocate for your loved one’s healthcare needs.
- 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.
- Know your loved one’s needs
From healthcare to grooming to safety, it’s important to determine what kind of assistance your loved one will need and want. Reach out to healthcare professionals and caregiver centers to find quality care in your area.
- 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.
- 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.
- 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 healthcare decisions to burial arrangements.
- 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.
- Connect with other caregivers
Get support from other caregivers who know what you’re going through. Try local support groups or connect online.
- Stay healthy
Being a caregiver can be stressful. Make sure you get regular check-ups, eat right, exercise and take time out for you.