Finding Help Outside Your Family

Consider the following suggestions to keep from feeling isolated:

  • Attend a local or online support group.
  • Ask for a reference to a family therapist or psychologist who understands dementia, and can assist you or your children.
  • Make exercise or your other tried-and-true stress reduction activities critical appointments on your calendar. Ask friends to meet you each week for early morning walks, or to assist you by supervising your loved one while you take an hour for yourself.
  • When people say, "Let me know if there's anything I can do to help," ask for specific assistance in a way that empowers everyone. Ask them to take your ill spouse to lunch or a movie, or spend time at home. Suggest help picking up groceries, running errands, or providing dinner occasionally.
  • Before social gatherings, you may want to guide family and friends. One husband sent the following suggestions about how best to interact with his wife:
    • As her disease progresses, she will initiate less communication, and will appear distant and disinterested in greetings and questions.
    • However, she still seeks connection with her family and friends. She is not hard of hearing, just unresponsive, so speak in a clear, normal voice.
    • She likes to walk, but should always be with someone unless she is in the house; even then, keep an eye on her.
    • When she eats, cut up small portions for her.
    • Sometimes she will take your hand, or lightly touch your arms or cheeks. Don't be alarmed. She fondly remembers her connection with you, but she can't tell you this in words, so this is her way of reaching out to you!

Locating Support:

  • http://www.caregiver.org/caregiver/jsp/home.jsp
  • http://www.nfcacares.org/
  • http://memory.ucsf.edu/
  • http://ftdsupport.com/side-localsupport.htm
  • http://www.alz.org/carefinder/support/support1.asp
  • http://www.theaftd.org/support-resources/finding-support

Internet Support Groups:

  • http://www.ftdsupportforum.com/
  • http://www.caregiver.com/index.htm
  • http://www.pdsg.org.uk/forum
  • http://health.groups.yahoo.com/group/dementia-griefcounseling/?tab=s
  • http://health.groups.yahoo.com/group/PPA-support/

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