Action Plan for Caregivers
by Dorothy Orr, R.S.W

Caregiver support Counsellor for Caregivers of people with dementia. Adapted for Caregivers coping with any disease. [as published in Horizon (quarterly publication of the Huntington Society of Canada) No. 78, Fall 1995]

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 of 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." "The doctor has made a mistake she doesn't have [HD]." "He's fine today, so he's getting better." "No, we don't need power of attorney." "Placement in a nursing home is not an option; I'm keeping her at home.

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

9. Learn to "let go" from the start and share your caregiving burden with others. 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 check-ups. 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 to help preserve your identity.

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 someone 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 help avoid caregiver burnout.

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