 | Mean age of caregivers: 59 (range was 17-94 years)
|
| 75% lived with the patient
|
| 32% worked (47% of those under age 65)
|
| 18% had quit their jobs to give care
|
| 66% showed clinically significant depressive symptoms
|
| 43% reported their own health as fair to poor
|
| 70% said patient could not be left alone
|
| 71% of patients could not bathe or dress alone
|
| 46% of the patients could not communicate or follow directions
|
| 40% reported their patient was abusive
|
| Greatest needs were emotional support and respite care
|
| Caregivers provided care an average of 93.3 hours per week
|
| Get help early - counseling, assistance with caregiving duties, etc. |
| Involve your family from the beginning by sharing your concerns with them |
| Access all the information you can about the disease and educate yourself as much as
possible about its progression |
| Have an awareness about the losses to come, such as incontinence, inability to dress,
etc., so they are not totally unexpected |
| Recognize the hidden grief component of your anger, anxiety, guilt, and depression.
Expect adaptation, but not resolution, of your guilt |
| Appreciate your grief and seek out someone who understands it |
| Recognize the signs of denial: for example, you insist, "I don’t need any
help." "Nothing’s wrong. Everything’s okay." |
| Acknowledge your right to feel emotionally off-balance |
| Learn to "Let Go" from the start and share your caregiving burden. Your loved
one can survive a few hours without you |
| Forgive yourself for not being perfect |
| Stop trying to be perfect: caregiving has turned your world upside down; make
compromises on housekeeping and other chores, getting support, etc. |
| Join a support group early |
| 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 |
| Hang on to your sense of Self. Keep up your regular activities as much as possible |
| 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 |
| Be kind to yourself. Remember you are experiencing normal reactions to abnormal
circumstances |
| Learn how to communicate differently with your loved one if cognitive and language
abilities decline. Good communication strategies help to avoid frustration |
| Make sure your family doctor is one who is willing to listen and understand |
| Accept yourself for being human; even if you "lose it", give yourself a pat on
the back for doing the best you can |
| Arrange for planned time away from the task of twenty-four hour care. Do things just for
you! |
William W. Lee, Ed.D.
