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

Taking care of yourself. That’s what The Cleveland Clinic’s recent article entitled “Caring for Someone with Huntington’s Disease” suggests for caregivers of loved ones suffering from Huntington’s disease.

There are three different stages of Huntington’s disease — early, middle and end stages. Each stage has different symptoms and care needs. Depending on the stage, the care and needs of that individual may change over time. Let’s take a look at what a person may experience and need at each stage.

Early stage. The symptoms in the first stage of Huntington’s disease include moodiness, feeling clumsy and having difficulty with complex thinking. Uncontrollable movements may also occur. However, for the most part, individuals can continue with their everyday activities. Starting an exercise or rehabilitation program is important during this time to help with balance and coordination.

Middle stage. During this stage, Huntington’s disease patients may have difficulty with working, driving and doing household chores. Symptoms include trouble swallowing, weight loss and loss of balance. Many Huntington’s disease patients feel isolated after dealing with major life changes, so it’s important to make sure they are interacting with friends and family.

End stage. The disease has progressed to the point where it makes it hard for individuals to leave bed, and care is needed 24/7.

A caregiver may also need to consider becoming a power of attorney or possible guardian, to have access to your loved one’s medical records and care plans. You may also want to talk about advanced directives with your loved one. Ask an experienced elder law attorney for help.

In addition, it’s critical for the caregiver to make certain they are caring for themselves. These are some ways to make self-care a priority:

  • Socialize with friends
  • Exercise
  • Get plenty of sleep
  • Maintain a healthy diet
  • Schedule routine medical checkups
  • Seek out help from a Huntington’s disease support group
  • Try professional counseling.

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