1. Get help early -- counseling, 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, such as incontinence, inability to dress, etc., so they are not totally unexpected.

5. Recognize 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. Recognize 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, etc.

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, accessing community care early and filling out placement papers.

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.

Many of these statistics are drawn from a Caregiver Member Survey conducted by the
National Family Caregivers Association
9621 E. Bexhill Drive
Kensington, MD 20895-3104
301/942-6430 FAX: 301/942-2302
800/896-3650

From the Summer '96 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Reprinted from the Horizon, Huntington Society of Canada Newsletter.

Next

Back To Other Dementia Directories

Back to Huntington's Directory