Adult Abuse Prevention Kit

Section Four: Caregiver Resources

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Caregiver’s Bill of Rights

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 relative.
  • to seek help from others even though my relatives 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 I reasonably can for this person, and I have the right to do some things for myself.
  • to get angry, be depressed, and express other difficult feelings occasionally.
  • to reject any attempts by my relatives (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  • to receive consideration, affection, forgiveness, and acceptance for what I do for my loved one 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 relative.
  • to protect my individuality and my right to make a life for myself that will sustain me in the time when my relative 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 towards aiding and supporting caregivers.

Add your own statements to this list, and read it periodically!

Taken from Caregiving: “Helping an Aging Loved One” by Jo Horne

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Symptoms of Caregiver Burnout

  • Disrupted sleep patterns, including insomnia or habitually oversleeping; never feeling rested, even when the primary caregiver has managed to have a full night's sleep; sleep troubled by disturbing dreams or nightmares.
  • Altered eating patterns, including not being able to eat or overeating; significant weight gain or loss.
  • Increased sugar consumption or use of alcohol or drugs.
  • Increased smoking or strong desire to start again after having quit.
  • Frequent headaches or sudden onset of back pain.
  • Increased reliance on over-the-counter pain remedies or prescribed drugs.
  • Irritability.
  • High levels of fear or anxiety.
  • Impatience.
  • The inability to handle one or more problems or crises.
  • Overreacting to commonplace accidents such as dropping a glass or misplacing something.
  • Overreacting to criticism.
  • Overreacting with anger toward a spouse, child, or older care recipient.
  • Alienation, even from those who offer relief and help.
  • Feeling emotional withdrawal.
  • Feeling trapped.
  • Thinking of disappearing or running away.
  • Not being able to laugh or feel joy.
  • Withdrawing from activities and the lives of others around the primary caregiver.
  • Feeling hopeless most of the time.
  • Loss of compassion.
  • Resenting the care recipient and/or the situation.
  • Neglecting or mistreating the care recipient.
  • Frequently feeling totally alone even though friends and family are present.
  • Wishing simply "to have the whole thing over with."
  • Playing the "if only" games; saying over and over "If only this would happen" or "If only this hadn't happened. "
  • Loss of hope, purpose, and meaning.
  • Thinking of suicide as a means of escape.

Adapted from “Preventing Caregiver Burnout,” James R. Sherman, Ph.D., Pathway Books, 1994, pages 7, 11, and 12.

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The Three Stages of Caregiver Burnout

Stage One - Frustration

The primary caregiver expresses continuing frustration and disappointment over the care recipient's deteriorating condition or lack of progress. The primary caregiver has difficulty
accepting the quality of care and effort has nothing to do with the actual health-related decline or mood of the care recipient.

Stage Two - Isolation

The primary caregiver struggles to maintain a sense of purpose in working so hard to provide care. He or she may express feelings of loneliness, being unappreciated, second-guessed, or criticized by other family members and the care recipient. Reality of the care recipient's condition and the limitations of care giving are not accepted. The primary caregiver is reluctant, unable, or unwilling to reach out for help from others.

Stage Three - Despair

The primary caregiver feels helpless and adrift. The primary caregiver is unable to concentrate and loses effectiveness as a caregiver. He or she is no longer excited about the progress or response of the care recipient to quality care. As a consequence, the primary caregiver neglects personal care and well-being, loses interest in the community, social contact, and respite activities, such as reading books, watching movies, or other stimulating activities.

Adapted from “Preventing Caregiver Burnout,” James R. Sherman, Ph.D., Pathway Books, 1994, pages 8-10.

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Tips for Caregivers: Is This You?

Providing care for an elderly adult requires a lot of patience, time, and love. However, all too often, caregivers run the risk of neglecting themselves, therefore affecting their ability to provide adequate services.

The following questionnaire can be used as a guideline by caregivers. If you answer "yes" to one or more of the following questions, you might consider seeking professional help or turning to whatever support system you have developed:

  • Are you getting enough rest?
  • Are you neglecting your own health?
  • Is constant surveillance required as part of your care tasks?
  • Have you turned to drugs or alcohol or increased their intake to deal with stress?
  • Have your feelings toward the older person become more negative?
  • Is the older person physically or verbally abusive toward you?
  • Does the older person need legal assistance with things like estates, trusts, or living wills, which may be beyond your knowledge?
  • Does the older person need to be transported often?
  • Are you overwhelmed because you are taking care of more than one person at a time?
  • Are financial constraints interfering with your ability to follow medical advice?
  • Are problems from your family's history resurfacing and contributing to the problem?
  • Does your spouse resent the amount of time you spend as a caregiver?
  • Are you confused, fearful, or angry as a result of being a caregiver?
  • Is your family communicating regarding the division of responsibilities?

Adapted from "Taking Care of Aging Family Members: A Practical Guide" by Wendy Lustbader and Nancy R. Hooyman (New York: The Free Press, 1994). (c) 1994 by Wendy Lustbader and Nancy R. Hooyman. (c) 1986 by The Free Press.

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Signs That May Indicate Malnutrition

  • Weakness or trembling
  • Excessive sweating
  • Weight loss
  • Sunken cheeks
  • General changes in appearance
  • Bouts of diarrhea
  • Dry, dull hair
  • Scaly, rough skin
  • Dry and reddened eyes
  • Swollen and red, patchy tongue
  • Poor muscle tone
  • Lack of energy

Adapted from “LeBoeuf's Home Health Care Handbook Eldercare Edition,” Gene LeBouef, Noel Press, Inc., Virginia, 1996, pages 451-452.

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Guidelines for Preventing Falls

For Floors, Halls, Doorways, and Pathways:

  • Remove all obstacles to safe passage, such as trash, wiring, wastebaskets, footstools, magazine racks, newspapers, books, magazines, shoes, and clothes.
  • Repair worn or ripped carpets.
  • Tape or tack down curled carpet corners or edges.
  • Place non-skid pads under throw rugs or remove them.
  • Repair loose floorboards.
  • Remove thresholds at doorways.
  • Buff waxed floors thoroughly and use nonskid wax.
  • Install handrails.
  • Adjust the location of hanging plants to prevent having to duck when passing and still permit watering without having to reach.

For Stairs:

  • Install an electric-powered lift to carry older adult care recipient up and down the stairs in a chair, build ramps on short stairways, or create a bedroom/bathroom suite on the first floor to eliminate the need for the care recipient to use the stairs.
  • Install sturdy handrails, as necessary, on both sides of the stairs, including those leading to entrances and the basement.
  • Make sure there is adequate lighting by the stairs.
  • Consider removing stairway carpeting. It makes footing more risky by shortening the depth of each step and rounding off step edges.
  • Use nonskid treads on stairs.
  • Mark step edges with brightly colored adhesive tape so each can be seen clearly.
  • Make sure that steps are no more than six inches high.

For Bedrooms:

  • Make sure the bed is at a height that permits the care recipient to get in and out easily.
  • Replace unlocking wheels with wheels that can be locked to make furniture more stable.
  • Replace or repair broken or unstable furniture, such as tripod tables.
  • Replace furniture with legs that curve outward, creating a tripping hazard.
  • Use chairs easy to get into and out of, with strong armrests and high backs for support.
  • Keep a walker or cane by the chair or acquire an electric-powered pneumatic chair that lifts and lowers the care recipient.
  • Make sure there is adequate light for reading and the light switches are easy to use.
  • Make sure a telephone is within easy reach of the care recipient.

For Bathrooms:

  • Keep the bathroom free of spills and litter.
  • Install a special raised toilet seat for easier use by the older care recipient.
  • Install grab bars near toilets and bath tubs.
  • Replace bar soap with a wall-mounted, liquid soap dispenser by the shower.
  • Install nonslip strips on the bottom of the tub and shower floor.
  • Place nonslip strips or rubber-bottom bathmats on the bathroom floor.
  • Avoid using bath oils that can result in slippery conditions.
  • Use a secure rod screwed into the wall to hang shower curtains.

Adapted with permission from How to Care for Aging Parents, Virginia Morris, Workman Publishing Company, New York, 1996, pages 137-142.

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