Becoming an Empowered Caregiver: Getting what you need from the facilty

We  left off with you at the hospital.  You suddenly find yourself the point person of the medical staff for information and decisions.   Your relative is looking to you for support and  to take care of everything.  If there is a situation of decreased cognition or unconsciousness, then you are the voice of the person.

You have now stepped into the official shoes of caregiver, one of the hardest jobs on the planet.  It can seem as if you have entered a different dimension of time and space, the twilight zone.  I say this because you will be called upon day and night, given information you have no understanding about and asked to make decisions at a moment's notice.  Your emotions will feel like a roller coaster ride.  This job has no daily hours or end time.  You may be woken in the middle of the night to make a decision or run to the hospital or facility in an emergency.

After shaking off the shock, it is important to get control of the situation as best possible.  Here are some suggestions.
MEDICAL
  •  Immediately speak with the physician who is overseeing the care in the hospital ER or floor.
  •  Find out exactly what the possible  diagnosis is, what tests , blood work are being and ordered and WHY.
  •  Do not hesitate to ask questions each time a new medication is going to be given, radiology test ordered or procedure done.
  •  Make sure the hospital knows of any allergies and there is a wrist band identifying the allergies.
  •  Don't be pushed into making a decision without the answers you need for an informed decision.  
  •  Make the request to be told before any changes are made.
  •  If you feel things are worsening, and you are not getting a response from the current medical team, contact patient relations, medical director, nursing director or anyone in a position of power.  

ADMINISTRATIVE
  • Find out about how the systems in the hospital/facility work.  Who is in charge of what areas?  For instance, does each floor have a supervisor for nursing and/or clerical staff?  
  • Ask who to contact for information for you and family.  Get all available phone numbers and extensions.  Ask if they do email.
  • After a few days, ask for a case conference with involved parties including medical, nursing, social work, discharge planning.   
  • Medical rounds occur daily usually in the early morning.   It is a good time to speak with the medical team and get an idea of the  plan.  It means getting to the hospital early.
  • Make sure HIPAA forms are filled out and in the chart.
  • If you feel your relative should not be alone, many hospitals allow overnight in the room.  Ask about the policy.  It is often public city hospitals that don't allow it.  You can have private duty aides or nurses if you feel there is a need.  Ask what the hospital policy is.
  • Finally, follow up on everything the doctor discusses with you.  It will get done faster if you follow up.  Don't think it will just get done.  Don't think you are bothering anyone.  It is about your relative and their needs.
SUPPORT
  • Create a support team for yourself, friends and family.  
  • Make sure to take time to eat and hydrate!
  • If you have a spiritual/religious practice, use it for support.  You can ask to have the hospital chaplain visit.

Next is the discharge planning.  
 

 

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