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.
Misunderstanding Your Feelings
- State your feelings in clear language. A person with HD may not “read” your emotions correctly.
- Discuss one thought or feeling at a time
- Attend couple or family counselling to practice good communication techniques.
- Allow extra time for completing activities. HD effects how accurately a person judges time.
- Avoid creating time pressure and deadlines if possible.
- Show forgiveness if someone is late. Their internal clock isn’t working well.
- Use calendars and reminders on phone/tablet/computer to help keep track schedules.
- Make timelines and offer reminders by text or calls.
Sense of Smell Issues
- Encourage or remind a loved one to bathe. They may not be aware that they don’t smell fresh.
- Establish a bathing schedule or routine to keep up good hygiene.
- Put a reminder sign on the stove to turn it off after using. A person with HD may not recognize the smell of gas.
Avoiding Falls and Safety Issues
- Declutter as much as possible.
- Remove big obstacles that are hard to get around.
- Simplify the decorations to decrease distractions
- Make an easy to walk path from room to room.
- Carpeting is softer if someone falls and is less slippery than wood or tile floors.
- Avoid area rugs that aren’t attached to the floor.
- Put padding on sharp corners of furniture.
Changing and Stopping Behaviors
- Learning a new way to do something will take time and patience. Don’t rush. HD slows down a person’s ability to learn.
- Use simple rewards for doing what is asked. Over time, this will help someone learn a new behavior.
- Punishing for not doing what is asked, doesn’t work. Save your eye rolls and deep sighs because they won’t make life easier.
- Distract a person to redirect them away from a problem behavior. Tips for distracting include: changing the subject, talk about good memories, give the person a fun and easy task, go for a walk, move to a different place, offer some comfort food, play music, start a new activity.
- Use the same phrases to remind someone to do something or to stop doing something. Some suggestions include:
- No more, it’s over
- We are done with that
- We aren’t going to talk about that
- Use the time out hand signal and stop talking
- Use a ticket system to give someone a certain number of opportunities to do something – like calling someone at work. Once they’ve used up their tickets for the day, they have to stop doing that activity
- Write down a word describing a topic or activity you want to stop and then rip up the word to show it’s time to move on.
- 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
- Holidays and Special Events
- Medication problems
- 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.
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.