Caregiving … Medical Advocacy … Connecting The Dots

With only ten percent of Americans dying suddenly, the other ninety percent of us will find our way into caregiving somewhere along the spectrum. It is reasonably safe to say that everyone has or will have some experience with giving or receiving care.

Caregiving is both a national preoccupation and a national crisis. There are simply not enough well-trained caregivers to go around and with decent, living wage pay to compensate them.

If we are family and friends giving care or receiving care from them, then we are involved in a dance that may encompass loyalty and genuine affection, as well as simmering levels of guilt, resentment, worry and energy drain.

If we are paying for caregiving companions and nurses’ aides, then we well know the vagaries of searching for and keeping someone trustworthy, pleasant and tuned into our real needs. We may feel lucky just to have a person show up every day, much less really be open to delving into our moods and bodily changes.

Yet things are changing: we rarely hold still. We are either on a slope toward greater health or greater decline. Who marks these passages? Often we wait until we don’t feel well, get obvious symptoms or fall down before we seek more professional care. But what would it be like if we became more of the arbiters of our own health care, more astutely tuned into what is going on and intervening with preventive measures to help stave off ER visits and crisis episodes?

We know that hospitals these days are under the onus of needing to reduce admissions and shorten lengths of stay. LifeBridge and other local health care systems are beginning initiatives to train community volunteers to be knowledgeable in helping seniors and others to identify issues and keep up their own health care practices. The idea is to inspire an active process where the health care consumer, family and paid cargiver all engage in promoting and enhancing the person’s well-being. Patient- centered care which formerly took place mainly in hospitals will now find a venue more in home and community.

This calls for what many of us have been intuiting all along. We need to be our own best advocates. We need to insist on knowledgeable caregivers who will be devoted to health care awareness and intervention, not just persons who will sit passively with us.

We need to become more comfortable articulating our caregiving and self-care practices so that when we go to an ER, a rehab facility, a hopsital we can speak assuredly about what has worked for us, what we would like to continue and how we may now partner with doctors and nurses as active participants in our health care. Dr. Leana Wen, Baltimore City Health Commissioner, in her book When Doctors Don’t Listen, suggests these practices on the part of the health care consumer.

  • Tell your whole story (besides stating current symptoms, also give background to your lifestyle and current health practices);
  • Assert yourself in the doctor’s thought process (before a doctor jumps to conclusions, insist that your version of what’s going on be addressed);
  • Participate in the physical exam (rather than sitting passively, ask specific questions so you understand what is being evaluated and also help the doctor focus on areas of your concern)
  • Make the differential diagnosis (talk about your specific symptoms, so that you are not arbitrarily lumped into a category)
  • Partner for the decision making process ( understand why certain diagnoses are being eliminated, so you can come up with a working diagnosis you both agree with)
  • Apply tests rationally ( get a thorough explanation of why each test is being offered; know that you do not need to accept it; understand what the results may show or not show)
  • Use common sense to understand the working diagnosis (at every visit, insist on an explanation for each part of your diagnosis)
  • Integrate diagnosis into the healing process (find out as much about your diagnosis as you can; ask for a clear explanation between this and whatever healing modalities are suggested; know the risks and benefits).

Created and written by: Joyce Wolpert R-DMT, LCPC

Joyce Wolpert is a Licensed Counselor and Expressive Arts Therapist.

Joyce Wolpert, LCPC, R-DMT
Licensed Counselor, Expressive Arts Therapist
410 358-0977 –

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