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Caregivers From A Survivor's Perspective

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"Caregiver" is the word used to describe family and friends who help take care of your needs.

It can be difficult to ask for help - but do it anyhow.

  • Some people even get angry at needing help. If you get angry at needing help, get over it. It's not much different than getting angry that the sun sets each day. Accept what is.
  • If you feel the least bit reluctant to ask for help, think about your own reaction when someone you care about has a health situation. Wouldn't you like to do something that helps offset the feeling of helplessness? Caregiving is also one way people can show they care. 

It is your choice who you want to be your caregiver(s). 

  • You do not have to let a person be a caregiver just because he or she shows up.
  • While caregiving helps the caregiver, your needs are paramount.
  • For information about how to choose a caregiver and to get family and friends to give you the help you need, click here.

If you have more than one caregiver, consider appointing one person as the main caregiver or point person.

  • He or she can help divide up filling your needs with your various caregivers. 
  • It is easier emotionally for a person to say "no" when necessary to a caregiver than it is to say "no" to a patient. 

If a caregiver goes with you to doctor's appointments, try to schedule as many as you can on the same day or, even better, on the same morning or afternoon. If a caregiver is working, there will be less work time lost. If he or she is not working, it will help reduce the possbility of burnout.

Free online tools are available to help coordinate care schedules. For example, see the following:

You can help caregivers get the information they need.

  • Caregivers seldom have access to doctors and other health care providers. If a caregiver doesn't go with you to doctors' appointments, consider letting the caregiver listen to recordings of the meetings or looking at your notes. If you have access to your electronic health record, decide whether to also give the caregiver access. (You may need to complete a HIPAA form allowing such access.)
  • If a caregiver does research, particularly on the internet, be sure he or she is aware that the journals and internet are filled with worst case scenarios. Educate him or her about how to do research correctly and how to separate sites with valuable, unbiased information from those which aren't of top quality. For a reminder about how to do medical research, including on the internet, click here. Please also remember to take any new information to your doctor for his or her assessment before accepting it as fact.
  • On a personal level, make sure your caregivers know what to do medically in case you become unable to speak for yourself and in other "what if" situations. To learn more, click here.
  • If you suffer from depression, guidelines can help caregivers help you. For instance, click here. offsite link 

When dealing with caregivers, keep in mind that:

  • The person is doing his or her best. That's all we can ask of people.
  • There is an emotional strain on caregivers both from caring for you and taking care of their own needs.
  • As changes in your situation occur, your relationship with your caregiver will likely change. Talk about your feelings and acknowledge that things are different when they are.  
  • One person cannot generally do everything. More than one caregiver may be needed.
  • If emotions get out of hand, professional help is available.

Consider offering a caregiver helpful suggestions.  For instance:

If a caregiver will drive your car, or drive his or her car for you, be sure that your Automobile insurance policy covers. Likewise, if you pay the caregiver, be sure that your Homeowners policy covers. You may also need Workers Compensation insurance if the person acts as an employee.

If you have a spouse: Consider suggesting that he or she check out Well Spouse Association offsite link. The association provides support and respite for caregiving spouses.

If you have young children:

  • Be sure that all caregivers who come into contact with your children know what you have told them about your health condition and treatment. It is not advisable for a child to get conflicting information. It will also prevent an adult telling a child something you don't want told.
  • Do not discuss anything you do not want a child to hear when there is even the remotest possibility that the child could hear. Whispering is likely to raise a child's curiorisity.
  • To learn about how to tell children about your condition, click here. For information about helping your children cope with your health condition, click here.

If a caregiver is employed:

  • AARP has a free book titled "Juggling Work and Caregiving" by Amy Goyer. For a link to get a free copy, click here offsite link.
  • If a caregiver needs to take time off work to take care of you, he or she may be entitled to time off thanks to the particular employer's benefits, and/or thanks to the federal Family Medical Leave Act or similar state law. In some states, such as California, the caregiver may even be entitled to get paid during the time off. (For more information about the California law, see: www.PaidFamilyLeave.org offsite link)

Holidays are stressful for everyone. They are even more stressful than normal for caregivers who are taking care of your needs in addition to their own, while at the same time trying to keep up with holiday traditions. For tips about dealing with holiday stress and depression, click here.

Acknowledge a caregiver's efforts.  When a caregiver does something helpful, let the person know how helpful and that you appreciate him or her. You may even add that you understand that the situation is difficult for the caregiver as well.

For additional information to help caregivers, consider the following:

For more information, see:

NOTE:

  • If you want to qualify for Medicaid and have too many assets, one way to legally decrease the amount of your assets is to enter into a caregiver's agreement. For informaition about Caregiver Agreements, click here.
  • If you need additional help, consider the following ideas:
    • Reach out to neighbors, your religious organization, any other organization to which you belong
    • Look at websites such as HereToServe.org offsite link

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