HD interferes with a person’s ability think, their mood, and their ability to control their movements. Because the disease changes the way the brain and body work together, it also changes the way a person behaves.
Focus on solving one problem issue at a time. Start with problems that involve safety, then work on problems that impact relationships or health, lastly tackle problems to improve quality of life.
Everyone is affected by the disease changes in different ways, but the strategies listed below have been proven helpful to people who are living with and caring for someone with Huntington’s disease.
Keeping Calm
- Keep a calm and quiet environment.
- Invite a friend or family member over who has a calming effect. Avoid inviting people who stir up emotions.
- Enjoy doing tasks together by asking the person with HD to do something that is within their abilities. For instance, they can fold the washcloths while you’re folding other clothes. Sing together while getting dressed.
- Show empathy. It’s hard for a person with HD to learn and communicate they way they used to. Care partners can show they understand and remind their loved one they’re not alone.
- Give yourself a break by stepping away from the caregiver role for a while. Find a family member or friend to step in for a short time. If you need help finding someone, contact HD Reach. Taking care of someone else is hard work and you deserve to take a regular break to take care of yourself.
- Talk to others. Describe your challenges and let someone else problem solve with you. HD Reach social workers and Meet-Ups offer great opportunities to talk to other people. Help4HD has a podcast with useful information too.
- Work with a therapist. Therapists are great at suggesting strategies to help change a problem behavior. As an added benefit, they can provide you with support and encouragement to keep going. HD Reach’s Therapy Path is designed to give people the strategies they need.
- Know your limits and seek help. If someone needs more care than you can provide, find the help you need. This can include bringing someone into your home or finding a care facility able to meet the needs of the person you love.
- Triggers are activities and events disrupting the calm and ordinary. Try to avoid these triggers when possible:
- Changing routine
- Changes in the lives of important family members
- Thirst
- Hunger
- Tired
- Holidays and Special Events
- Sickness
- Medication problems
- Pain
- Deaths
- Political Issues
- Someone may not be able to tell you they’re hungry, tired, constipated or has a cold. Be on the lookout for changes making the person feel bad.
- Safety Plans are used to manage out-of-control or unsafe behavior. It should be figured out during calm times to help everyone stay safe and calm as possible.
Behavior Logs
Using a behavior log helps figure out patterns of when the problems happen.
Tips for keeping a log:
- Fill in the behavior log each day during a calm period.
- Write about each event by starting at the last moment before the problem started.
- Describe each action, thought or emotion from the start of the problem until it resolves.
- Include your own emotions and reactions
- Objectively identify the real problem, not just the part that was most painful.
- Include problem-free days so that you can see the whole pattern.
