Living with Huntington’s Disease

Huntington’s disease affects not only the person diagnosed but also their loved ones. As symptoms progress, daily routines, long-term care and emotional well-being become important considerations.

Planning ahead and using available resources can help maintain a good quality of life. Whether managing the disease yourself or caring for someone with it, knowing where to find support can make day-to-day life easier. 

Read on to learn more about living with Huntington’s and the resources available to help.

Caring for yourself and others with Huntington’s disease

Living with Huntington’s disease brings both physical and emotional challenges. Recognizing these challenges and approaching each day with flexibility and patience can make a difference.

Self-care tips

Huntington’s is a progressive disease, which means it will change over time. Some days will feel easier than others. Be patient with yourself. 

• Take your time: Whether it’s eating, dressing or walking, go at your own pace. It’s okay to take breaks.
• Break tasks into steps: Focus on one small part at a time. For example, you can focus on one item of clothing at a time or prepare one part of a meal first.
• Ask for help: Lean on friends, family and caregivers when needed to prevent stress and frustration. 

For caregivers: Supporting a loved one

Caring for someone with Huntington’s disease is both rewarding and demanding. You may feel like you need to handle everything on your own, but it’s important to be patient and flexible with the person you’re caring for and yourself.

Each stage of the disease brings new challenges and you play an important role in your loved one’s health, safety and emotional well-being. Here are some ways to manage caregiving tasks and maintain your own well-being:

• Expect ups and downs: Some days will be better than others. Symptoms may fluctuate, and what works one day might not work the next. Adapt and adjust your approach to reduce stress.
• Avoid rushing: Give your loved one extra time for tasks like eating, dressing or speaking. Rushing can lead to frustration and accidents.
• Break tasks into parts: You don’t need to do everything at once. Divide tasks into smaller parts, whether it’s helping with meals, mobility or medications.
• Stay calm during emotional moments: Mood swings, irritability or even aggression can be part of Huntington’s disease. Try to remain patient and remember that these changes are caused by the disease, not by the person.
• Take breaks: Caregiving is a long journey. Take time for yourself to recharge and approach challenges with a clearer head to avoid compassion fatigue.

Helping with daily activities

As Huntington’s progresses, your role in daily care may grow. Here are some ways you can help:

• Meal preparation: People with Huntington’s may experience problems swallowing, weight loss or trouble feeding themselves. Choose healthy, easy-to-eat meals to prevent weight loss. 
• Mobility support: Assist with walking, dressing and using aids such as walkers or wheelchairs. 
• Communication support: Use simple words, visual cues and patience to improve communication and understanding. 
• Medication management: Keep track of medicines and ensure they’re taken on time.

Planning for the future: Long-term care decisions

Advance directives

As Huntington’s disease progresses, it is important to make decisions about your medical care in advance. Having an advance directive in place can reduce stress and ensure your wishes are followed.

An advance directive is a legal document that guides medical decisions if you can’t speak for yourself. This document also ensures that your loved ones and health care team honor your wishes.

It includes:

• Living will: Specifies your preferences for medical treatments, such as whether or not you want life-prolonging treatments like tube feeding or ventilators. 
• Durable power of attorney: Names someone to make health care decisions on your behalf if you become unable to communicate your wishes.
• Do not resuscitate (DNR) order: States if you want life-saving measures, such as CPR, in the event of an emergency.

Sample forms from various organizations are available online to help you start your advance directive. Please note that laws about advance directives are different in each state.

Financial planning

Huntington’s disease can lead to increased medical costs, home modifications and long-term care expenses. Planning early can ease financial stress. Consider:

• Apply for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI)
• Explore Medicaid and Medicare options
• Set up a special needs trust to protect assets while maintaining benefits
• Look into long-term care insurance options for assisted living or nursing home costs
• Working with a financial planner or social worker can help you navigate these complex decisions.

Support groups and community resources

Living with or caring for someone with Huntington’s disease can feel overwhelming. Connecting with others provides emotional and practical support. Many organizations and resources are available to help.

Support groups: Joining a support groups allow individuals with Huntington’s, caregivers and family members to share experiences, gain advice and find comfort in knowing they are not alone.

• Huntington’s Disease Society of America: HDSA offers educational resources as well as local and online support groups.
• Local hospital or neurology clinic: Ask your health care provider about local groups.
• Online communities: Social media groups and forums provide connection and advice.

Educational and counseling resources: In addition to support groups, there are many resources available to help:

• Genetic counseling: Helps families understand risks and testing options.
• Mental health support: Therapy can help you cope with stress and emotional changes.
• Legal resources: An attorney can assist with financial planning and future care options. 

When to consider palliative or hospice care

As Huntington’s disease progresses, care needs change. Palliative and hospice care focus on providing comfort and improving quality of life rather than attempting to cure the disease.

Palliative care is about managing symptoms and providing comfort during all stages of the disease. It can be started at any time and focuses on relieving pain, addressing emotional and psychological needs and offering support to caregivers. 

Hospice care is designed for individuals with advanced Huntington’s disease who are nearing the end of life. Hospice focuses on providing comfort and support, both medically and emotionally. It includes:

• Pain and symptom relief
• Help with personal care
• Grief counseling for families
• Ongoing caregiver support

Though difficult, choosing hospice care can ensure a peaceful and dignified end-of-life experience.

Take the next step

Talk to a Banner Health specialist who can help you access resources and manage the challenges of Huntington’s disease.