What Should I Know about Caring for a Loved One with Huntington’s Disease?

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A family member has just been diagnosed with Huntington’s disease. You’re the primary caregiver. It can be an overwhelming time full of changes and transitions for both you as the caregiver and for the person diagnosed with Huntington’s disease.

Huntington’s disease is a genetic disease that attacks your brain and can cause unsteady and uncontrollable movements in your hands, feet and face. It can also make simple, everyday tasks hard to do. Huntington’s disease will also make it harder for individuals to move about their homes with ease and without supervision.

The Cleveland Clinic’s recent article entitled “Caring for Someone with Huntington’s Disease” helps understand the types of changes you need to make and how can you make sure you’re taking care of your loved one in the best way.

Being the primary caregiver for anyone with a disability or medical condition can be a major task. You must think about their emotional, physical and social needs. It’s also important to remember that, at times, your loved one won’t be able to control their thoughts and actions. You, therefore, must have patience and understanding.

It’s important to use inclusionary statements when speaking to your loved one with Huntington’s disease, such as using “we.” For example: “We need to wash your hands. We need to make dinner.” This makes it feel less directive and not like you’re nagging.

Assemble a team of medical professionals. In addition to a neurologist, you might want to consider enlisting a physical therapist, an occupational therapist, or a speech therapist.

Know that the daily needs of a person living with Huntington’s disease changes over time, and as a caregiver, you need to be sure they’re able to get the help they need. People with Huntington’s disease are more at risk for falls and other accidents. As a result, as a caregiver, you should assess their living space and identify any potential hazards. Some general safety precautions include the following:

  • Removing lamp, phone and extension cords from the main walkways
  • Using slip-resistant rugs, mats and runners
  • Ensuring that sure smoke detectors and fire extinguishers are near bedrooms and are in working order
  • Arranging furniture for maximum movement and accessibility; and
  • Securing any weapons in a safe, locked location.

You may be able to work with your loved one on how to manage their own care, depending on the stage of their condition. A daily checklist can be helpful, and it might include these types of tasks:

  • Scheduling appointments
  • Filling prescriptions
  • Taking prescriptions at correct times
  • Eating healthy meals
  • Bathing and dressing themselves
  • Getting exercise
  • Scheduling social activities with friends and family
  • Living arrangements.

As the caregiver, it’s critical to monitor the way in which your loved one responds to everyday tasks and the amount of help they require.

Reference: The Cleveland Clinic (Jan. 4, 2022) “Caring for Someone with Huntington’s Disease”

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