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A Caregiver's Bill of Rights

by Jo Horne

I have the right:

  • To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
  • To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
  • To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  • To get angry, be depressed, and express other difficult feelings occasionally.
  • To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  • To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  • To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  • To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  • To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

(Reprinted with permission of Today’s Caregiver.)

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MDA ALS Caregiver's Guide

  • Introduction
  • Chapter 1 — The ALS Caregiver
    • A Caregiver's Bill of Rights
    • Rules for the Care and Treatment of Caregivers
    • Resources
  • Chapter 2 — Daily Care of Your Loved One with ALS
  • Chapter 3 — Respiratory Issues
  • Chapter 4 — Communication Issues
    • The Right Words (Communication Board)
  • Chapter 5 — Nutrition Issues
  • Chapter 6 — Emotions
    • My Yearlong Community Project Report
    • Role Changes in Marriage
  • Chapter 7 — Financial, Legal and Medical Issues
    • Finding Funds: Government Sources
    • Finding Funds: Private Sources
    • Help with Health Care and Equipment Costs
    • Organizing Financial Information and Making Decisions
      • Health Care Directive for the Individual with Amyotrophic Lateral Sclerosis
  • Chapter 8 — Finding Caregiving Help
    • How to Cope: Just Say Yes
    • Long-Term Care
    • Other Assistance
    • Rewards of Caregiving
    • Additional Resources
  • Chapter 9 — End-of Life Issues
  • Appendices
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