Home page
About the New Zealand HD Associations
Living with Huntington's Disease
Publications, press releases, conference information
Selected articles from HDA newsletters
2009 Newsletters
2008 Newsletters
2007 Newsletters
2006 Newsletters
2005 Newsletters
News, articles and links to items of interest in HD research
New Zealand contacts
Acknowledgement and Disclaimer

Issue 93, June 2006

Twenty Top Tips for Carers

By Marge Demepsey and Sylvia Baago,
Alzheimer Society of Niagara Region

  1. Get help early – counselling assistance with caregiving duties, etc.

  2. Involve your family from the beginning by sharing your concerns with them.

  3. Access all the information you can about the disease and educate yourself as much as possible about its progression

  4. Have an awareness about the losses to come.

  5. Recognise the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation, but not resolution, of your grief.

  6. Appreciate your grief and seek out someone who understands it.

  7. Recognise the signs of denial: for example, you insist, “I don’t need any help”. “Nothing’s wrong. Everything’s okay.”

  8. Acknowledge your right to feel emotionally off-balance.

  9. Learn to “Let Go” from the start and share your caregiving burden. Your loved one can survive a few hours without you.

  10. Forgive yourself for not being perfect.

  11. Stop trying to be perfect: caring for someone with a chronic illness means your world has been turned upside down and you will probably have to compromise some of your personal standards of housekeeping.

  12. Join a support group early.

  13. Take care of yourself – physically and emotionally. Have regular checkups. Get as much rest and respite as possible. Eat well-balanced meals. Give yourself time to cry. Don’t be afraid to acknowledge your feelings of anger, anxiety, helplessness, guilt and despair.

  14. Hang on to your sense of Self. Keep up your regular activities as much as possible.

  15. Take one day at a time, but don’t neglect to plan for the future. Good planning can include getting a power of attorney and accessing community care early.

  16. Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.

  17. Learn how to communicate differently with your loved one if cognitive and language abilities decline. Good communication strategies help to avoid frustration.

  18. Make sure your family doctor is one who is willing to listen and understand.

  19. Accept yourself for being human; even if you “lose it” sometimes, give yourself a pat on the back for doing the best you can.

  20. Follow the action plan to avoid caregiver burnout.
Acknowledgement: “Gateway” Australian HDA (NSW) Inc Summer/Autumn 2006

Back to the top | Back to Contents

Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

Home | About | Information | Resources | Newsletters | Research | Contacts | Disclaimer |
Original content © HD Associations of New Zealand