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Dear Lost in Caregiving:
Your plea really helps underscore the many difficult realities a caretaker can run up against: modern medicine that can both work wonders and create confusion and inconsistency in a patient and the complicated dynamics that can kick in when family members feel guilty, greedy or just plain misunderstand the needs of an aging patient. And you also are being forced to contend with translating the gibberish of the medical and legal worlds—both of which are well known for speaking in tongues.
I’m hoping I can help a little, at least with the translating part. That should take away some of the guesswork in your situation and assure you that you need not make a blind judgment call in deciding when your duties as patient advocate and power of attorney agent begin. Both documents that appointed you to act should contain some pretty good guidance—and best of all, allow you to get help from an unexpected source: the doctors attending your grandmother.
Most patient advocate forms specify that the advocate’s decision-making duties begin when “the attending physician and another physician” certify that it is necessary. And powers of attorney that take effect when a patient is considered disabled or incapacitated go into force “when a physician certifies in writing that the principal is incapable” of making his or her own medical decisions.
Given your description, it is likely that the attending physician and another specialist would be ready to make these written certifications. Their decisions should be based on whether your grandmother understands the subject areas covered by the documents, whether she understands their implications—and most importantly, whether they believe she can make and communicate reasoned choices.
If they believe it’s time to certify that the documents should take effect, ask them to do it in writing and in plain English. These simple signed statements may also be helpful to you in combating the doubts and suspicions of your grandmother’s other family members who are now questioning your role.
If you have difficulty in getting the doctors to cooperate, contact the patient representative or administrator at their offices or facilities. Some offices even affiliate with social workers or other professionals who may be able to facilitate a family meeting explaining the situation to all involved.
And finally, I see from your blog that you are well aware of a number of resources. But there are a couple of places to which you might turn for specific help with your current caretaking challenges.
- The local office of the Area on Aging [n4a.org] should be able to provide advice and direction to nearly resources.
- And the Patient Advocate Foundation [patientadvocate.org] publishes a number of resources to consult for financial and insurance help.
