Caring for Someone With Huntington’s Disease

Being a caregiver can be challenging

Caring for someone with Huntington’s disease involves paying attention to and helping manage the emotional, physical, social, and practical needs of your loved one as they cope with their condition. Unfortunately, taking care of your loved one can take a toll on you, the caregiver, which is why it is important to consider and take care of your own needs as well.

Caring for someone with Huntington's disease can be challenging

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Managing Medical Care 

Helping your loved one manage their medical care is a major part of caring for someone who has Huntington’s disease.

Depending on the stage of their condition, they might be able to:

  • Take charge of their own care with minimal assistance from you
  • Be a partner with you in their care
  • Cooperate with their care, with you taking the lead

Health complications, such as infections and malnutrition, can be problematic as your loved one becomes less independent and less able to cooperate with their own care.

Things you can work on together include: 

  • Scheduling medical, therapy, and test appointments
  • Going to appointments
  • Reviewing medical instructions
  • Filling prescriptions 
  • Taking medication as prescribed 
  • Doing at-home exercises as prescribed by their physical therapist or occupational therapist

Recognizing signs of worsening Huntington’s disease and of medical complications is also an important part of the assistance that you can give your loved one, especially because they might not be able to recognize worsening effects of their disease—such as psychosis and diminished cognition (thinking skills).

Practical Needs

When it comes to caring for someone who has Huntington’s disease, there are a number of practical considerations to keep in mind.

Home Safety 

Safety is important because the physical effects of the condition, like chorea, can make it hard for someone to maintain physical control of their own body. Additionally, the cognitive effects can impair reasoning, potentially leading to accidental injuries.

You might need to reorganize your home to make sure that your loved one is not in danger of at-home accidents, like falling down steps or bumping into furniture. You should also make sure that the bed they sleep in is not too high, so they won’t fall out or have trouble getting in and out of bed. 

Bath and shower safety can be a concern as well. You should make sure your loved one is safe in the bath or shower while also respecting their sense of privacy. You can discuss and plan a safety strategy together.

Self-Care 

If your loved one is still relatively independent, you can help by working together on a checklist of daily self-care tasks—like brushing teeth, eating, getting enough fluid, using the toilet, and avoiding staying in one position for too long.

These tasks can help prevent medical issues (like pressure sores from staying in one position for too long), and they can also help your loved one feel their best.

Living Arrangements 

Huntington’s disease can advance to a degree that is too hard to manage at home. If your loved one is not independent enough to participate in their own care, you should work with their healthcare team to decide whether you need more help at home or whether your loved one needs the professional, full-time care offered at a skilled healthcare facility. 

You might have a job and other responsibilities that make it impossible for you to realistically keep an eye on them as much as they need. Their care could require medical interventions that you aren’t trained to do. Also, irritability or anger can be major effects of the condition, and you might not be able to manage things on your own at home.

Keep in mind that there are a number of types of care facilities, and that you and your loved one should consider the different levels of care as you decide what’s right for you. 

Psychiatric Needs

Huntington’s disease causes many psychiatric and psychological effects. These issues are partially managed with prescription medication and professional therapy, but they worsen over time.

You can help optimize your loved one’s ability to cope with these issues by helping them stay oriented with a predictable schedule, calendars, clocks, and familiar surroundings. These strategies can be helpful whether you and your loved one live together, or if they live elsewhere.

You can also get advice from their medical providers about how to speak with them if they have hallucinations or other psychiatric issues, so to minimize their sense of disorientation and agitation.

Emotional and Social Needs

When you are caring for a person who has Huntington’s disease, you might have an idea of what they value in life and what makes them happy. Try to help them maintain some of the hobbies they enjoy, if that’s possible.

For example, if you can facilitate activities like lunch with their friends, going to religious services, visiting museums, or other activities that they consider important, it can help them stay socially connected and optimize their quality of life.

Caregiver Support

Taking care of yourself is vital when you are caring for someone who has Huntington’s disease. It is important to acknowledge that you could also be concerned about the possibility that you or someone in your family could be at risk of developing this hereditary condition.

It’s also emotionally difficult to watch a loved one become unable to care for themselves, and you can become exhausted from the day-to-day responsibilities, potentially even becoming resentful of how much you have given up in your own life. 

All of these issues can be hard to deal with on your own, and it’s important that you seek help from others, including professional help and guidance as you navigate the process. 

Things you may need to do for yourself include:

  • Getting routine medical checkups and care for health problems that you may have
  • Deciding if you want to have genetic testing for Huntington’s disease (and getting professional counseling before your test so you can be prepared to cope with your results)
  • Getting regular exercise 
  • Getting enough sleep 
  • Eating healthy 
  • Having time for your own hobbies and socializing 
  • Maintaining your spiritual practices 
  • Getting help with caring for your loved one from friends or relatives 
  • Getting professional help with caring for your loved one at home
  • Seeking emotional support through a Huntington’s disease caregiver support group or another support group where you are comfortable 
  • Getting professional counseling 

A Word From Verywell

Caring for someone who has Huntington’s disease can be challenging. From the demands on your time to the responsibility, it can leave you with little energy for yourself. Also you might be stressed about your own risk, or feel a sense of guilt if you were at risk of inheriting the disease and tested negative. 

Be sure to give yourself attention and to seek help from others you trust. Your own mood and health are important, and maintaining your best life can help lift your loved one’s spirits as well.

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