“CAREGIVERS SELF- ADVOCACY TIP SHEET

The Caregivers Self-Advocacy Tip Sheet is a handout that contains the Caregivers Rights and tips for working with support agencies and organizations. You can distribute this tip sheet to caregivers at any time. It is particularly useful when discussing the need for self-care. Tip sheets can be made available in the church office, placed on the website or mailed upon request. AARP Foundation CC2C Caregivers’ Handbook

C A R E G I V E R ’ S B I L L O F R I G H T S :

I have the right to...

  1. Take care of myself. This is not an act of selfishness. It will give me the capability to take better care of my relative.

  2. To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

  3. 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.

  4. To occasionally get angry, be depressed and express other difficult feelings.

  5. To reject any attempts by my relative (either conscious or unconscious) to manipulate me through guilt.

  6. To receive consideration, affection, forgiveness and acceptance for what I do from my loved one for as long as I offer these qualities in return.

  7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

  8. To protect my individuality and my right to make a life for myself both now and when my relative no longer needs my full-time help.

  9. 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.

(This “Bill of Rights” is adapted from Caregiving: Helping an Aging Loved One by Jo Horne, AARP Books, 1985)

CAREGIVER TIPS: GETTING WHAT YOU NEED FROM AGENCIES

The following are some strategic tips you can use when working with various agencies to obtain information or access support services. In some cases you may be transferred a few times before you get what you need, but don’t give up. Use the following information to ensure success.

• Be prepared. Assess your needs and those of your loved one

• Talk with other caregivers first to discuss their experiences with various agencies.

• Contact your local department of aging. Identify it by using the online Eldercare Locator . Briefly share your caregiving situation and clearly state what you need.

• Ask to speak with a case manager at the local agency of aging if you or your relative has complicated needs.

• Ask for the first and last name and direct telephone number of everyone you speak with. Note who you are being referred to and their department.

• Ask about alternative solutions to meet your needs.

• Ask about the eligibility criteria, how to apply for services, fees, whether there is a waiting list and what types of insurance are accepted.

• Repeat back the information you hear to ensure you understand what is being said.

• Ask for references from other clients.

• Always compliment helpful individuals and inform their supervisors of their good work. Send them a thank-you card. Report rude workers to their supervisors.

• Follow the chain of command when voicing a complaint.

• Put concerns or recommendations in writing. A word put in writing is worth a thousand spoken words.”