Dementia in Amyotrophic Lateral Sclerosis (Lou Ge (cont.)

Support Groups and Counseling

Living with motor neuron disease presents many new challenges, both for the affected person and for family and friends.

• You will naturally have many worries about the disabilities that come with the disease. You worry about how your family will cope with the demands of your care. You wonder how they will manage when you are no longer able to contribute. You may feel anxious about death.
  
  
• Your loved ones also feel anxious about your death and how much they will miss you. They wonder how they will care for you through your illness. Money is almost always a concern.
  
  
• Many people in this situation feel anxious and depressed, at least sometimes. Some people feel angry and resentful; others feel helpless and defeated.

If you are affected by motor neuron disease, talking about 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 concerns, 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 about having motor neuron disease. Your primary care provider or neurologist should be able to recommend someone.

Family caregivers play a very important role in the care of persons with this condition. If you are a caregiver, you know that caring for a person with dementia can be very difficult.

• It affects every aspect of your life, including family relationships, work, financial situation, 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 your loved one’s condition, 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 very helpful. Others need more help, but may feel uneasy about asking for it. 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 taking part in support groups for families affected by serious disease. Support groups serve a number of different purposes for a person living with the extreme stress of being a caregiver for a person with motor neuron disease and dementia:

• 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:

• ALS Association - (800) 782-4747 or (818) 880-9007
  
  
• Les Turner ALS Foundation - (888) ALS-1107 or (847) 679-3311
  
  
• Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106

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