Huntington Disease Dementia (cont.)

Support Groups and Counseling

The diagnosis of HD is devastating for the affected person and family members.

• Learning you have HD is particularly difficult because you probably have watched family members stricken with the disease and know what will happen.
  
  
• You probably fear the mental and physical declines that come with the disease.
  
  
• You may worry about your family and how they will cope with your illness and death.
  
  
• Depression, anxiety, withdrawal, resentment, despair, and rage are common reactions.

Talking about your feelings and concerns may help.

• Your friends and family members can be very supportive. They may be hesitant to offer support until they see how you are coping. Don't wait for them to bring it up. If you want to talk about your disease, let them know.
  
  
• Some people don't want to "burden" their loved ones, or they prefer talking about their concerns with a more neutral professional. A social worker, counselor, or member of the clergy can be helpful if you want to discuss your feelings and concerns. Professionals on your care team may be able to help, or they should be able to recommend someone who can.
  
  

If you are a caregiver for a person with HD, you know what a difficult job this is.

• It affects every aspect of your life, including family relationships, work, financial status, social life, and physical and mental health.
  
  
• You may feel unable to cope with the demands of caring for a dependent, difficult relative.
  
  
• Besides the sadness of seeing the effects of your loved one’s disease, you may feel frustrated, overwhelmed, resentful, and angry. These feelings may in turn leave you feeling guilty, ashamed, and anxious. Depression is not uncommon.
  
  

Different caregivers have different thresholds for tolerating these challenges.

• For many caregivers, just “venting” or talking about the frustrations of caregiving can be enormously helpful.
  
  
• Others need more, but may feel uneasy about asking for the help they need.
  
  
• One thing is certain, though: If the caregiver is given no relief, he or she can burn out, develop his or her own mental and physical problems, and become unable to continue as a caregiver.
  
  

This is why support groups were invented. Support groups are groups of people who have lived through the same difficult experiences and want to help themselves and others by sharing coping strategies. Mental health professionals strongly recommend that family caregivers take part in support groups. Support groups serve a number of different purposes for a person living with the extreme stress of being a caregiver for a person with HD.

• The group allows the person to express his or her true feelings in an accepting, nonjudgmental atmosphere.
  
  
• The group’s shared experiences allow the caregiver to feel less alone and isolated.
  
  
• The group can offer fresh ideas for coping with specific problems.
  
  
• The group can introduce the caregiver to resources that may be able to provide some relief.
  
  
• The group can give the caregiver the strength he or she needs to ask for help.
  
  

Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the organizations listed below. You can also ask your health care provider or behavior therapist or go on the Internet. If you do not have access to the Internet, go to the public library.

For more information about support groups, contact the following agencies:

• Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106
  
  
• Huntington’s Disease Society of America - (800) 345-4372
  
  
• Huntington’s Disease Advocacy Center
  
  
• National Alliance for Caregiving
  
  

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