References: 1. Taking care of you: self-care for family caregivers. Family Caregiver Alliance. Accessed December 16, 2020. https://www.caregiver.org/taking-care-you-self-care-family-caregivers 2. Care for the Family Caregiver: A Place to Start. National Alliance for Caregiving; 2010. Accessed December 16, 2020. http://www.caregiving.org/data/Emblem_CfC10_Final2.pdf 3. A Caregiver Guide for HD Families. Huntington’s Disease Society of America; 2016. Accessed December 16, 2020. http://hdsa.org/wp-content/uploads/2016/05/HDSA_CaregiverGuideFamilies_Final.pdf 4. Talking about HD with family and friends. Huntington’s Disease Youth Organization. November 23, 2021. Accessed December 16, 2020. https://en.hdyo.org/a/387-talking-about-hd-with-family-and-friends
Care partner support
An important step when caring for someone with Huntington’s disease and chorea is finding time to care for yourself1
The impact of Huntington’s disease (HD) and HD chorea affect not only the person experiencing unintentional movements, but their care partners and everyone close to them. Watching someone
you care about struggle can be hard, so take steps to make looking after yourself a daily priority, too.
Why self-care is so important
Why self-care is so important
You may feel like it’s easier to focus only on your care partner responsibilities, or you may feel like you lack time or energy to devote to yourself. However, looking after your own needs, along with those of the person for whom you care, may have practical benefits.
- Balance: You can try to balance the demands of your day by carving out time to do enjoyable things, such as taking a walk or having coffee with a friend.2
- Health: Your physical health may improve. This may better position you to attend to daily tasks, and allow you to be more present for the person with HD chorea in your life.1,3
- Motivation: With time devoted to self-care, you may find it easier to process the challenges of caring for someone with HD. This can help with motivation and confidence.3
The time, commitment, and personal toll of caring for someone with HD chorea is considerable. To begin, consider an approach to self-care that reserves a few minutes each day for simple activities such as:
Taking a walk around the block
A form of light exercise such as yoga
Listening to a favorite song
Reading one chapter of a book
Working on a crossword puzzle or playing a mobile game
These tasks may seem small, but they may be all you need for the time being. Brief moments can become longer moments over time.
Opening up to others and
asking for help
Opening up to others and asking for help
Opening up to others about caring for someone with HD chorea may help you manage your emotions, expand your support system, and release feelings of tension or stress.2-4 It may also give you the chance to clear up myths or stigmas about HD chorea so that people don’t get the wrong impression of you or the person you care for.
When choosing to share experiences about HD chorea, work with the person you care for, if possible, to think through why you want to share this personal information, and how and when to proceed. Consider the following as you prepare:
- In general, talking with others may help you sort through your feelings and put things in perspective.3,4
- Opening up to others may help them understand HD chorea and why caring for someone with HD takes so much of your time and energy.2
- Keeping others up-to-date on the latest information can help them provide the best support.
- Asking for support can be hard, but being your own advocate is just as important as being there for a loved one with HD chorea.1
- If a friend or family member offers to help, say yes. Dedicate this newfound time to doing something for yourself.
- Accept that not everyone may be able or willing to help you.
Ask a member of your healthcare team if they can direct you to a local caregiver support group. You can also connect with fellow caregivers online by visiting the sites below, to learn more about Huntington's disease and the unique challenges of caring for those it affects.
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