Patient and Family Caregiver Action Plan

By Peter Edelstein, MD. Medically reviewed by Niki Barr, PhD. May 7th 2016

When you or someone you love is diagnosed with a serious, life-threatening disease, it’s a game changer. Everything is suddenly very different than you imagined, and it’s easy to become overwhelmed with urgency and grief.

Many people feel frozen into passivity, burdened by multiple questions and fear. Yet, hesitation or a lack of preparation when making major decisions (such as choosing chemo vs. radiation or assisted living vs. a nursing home, or finding the right doctor) can have negative repercussions in longevity, finances and quality of care.

Make Smart Decisions As A Team

Few folks are fully prepared for what comes after the big diagnosis — particularly when it involves an overwhelming quantity of critical information and medical jargon. Start writing things down.

There’s one fundamental concept that every family caregiver (and every patient too) should explore and master: Know the patient’s vital signs when preparing for a doctor’s visit. These tangible measurements arm both the patient and the caregiver for action and education. If you are a family caregiver, you should know your own vital signs as well as those of a sick person in your home. Input the stats into your phone or write them down, keeping the information handy for easy access.          

You can also learn to recognize an unhealthy heart rate or high blood pressure and other vital signs. Practice being able to communicate about vital signs calmly, especially if there is an emergency or any progression in these symptoms.

Ensure Doctor-Patient Compatibility

Once you or a loved one has been diagnosed with a chronic condition, such as diabetes or heart disease, there’s a strong possibility that the elected doctor will serve as a partner in care for the next 20 to 30 years. Therefore, it’s critical that everyone is compatible.

A primary care physician is the centerpiece of any action or prevention plan. When interviewing doctors, jot down your questions, take thorough notes and don’t just listen for quick answers. Tune in to the doctor’s tone of voice, his bedside manner (i.e., a healthcare professional’s approach in a doctor-patient relationship) and even his patience with family interruptions.   

The potential physician partner should also recommend supportive websites, compatible hospitals and specialty surgeons.

Next Steps for Patients  

  • To become truly proactive, do your own homework on the doctors you and/or your caregiver are interviewing, as well as on new medications and second opinions. 
  • Even after securing a primary care physician, regularly invest the time and resources needed to explore all of the options about your disease or condition. Continue to keep track of medical news, as there may be helpful updates regarding your health condition.

Next Steps for Caregivers

  • Sharing your life with someone who has a heartbreaking diagnosis can shake you loose from the moorings of your regular day-to-day life. Everything shifts dramatically, and most caregivers end up feeling guilty and exhausted. Know when to get professional help.
  • Do not create resentments with the person who is sick during this tenuous time by pampering or babying him needlessly. Family caregivers should allow the patient to be as strong, whole and vital for as long as he can possibly be.
  • Talk more openly than you have ever done before; take healthy breaks to be by yourself; and encourage the patient to be proactive and educated about his disease and its impact.

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