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Advocating for a Loved One

So many of us are, or have been, in a caregiving role for a friend or loved one and whether we know it or not, we are very often their most important advocate.

Some estimates suggest that over 65 million Americans identify themselves as caregivers.  While this can at times be daunting, there are some things you can do to make things easier and your role more effective.
Get organized.

Create a document with the following key information:

  • Up to date medication list
  • Allergies, get a wristband or other indicator if needed.
  • Primary medical conditions ( ex. Diabetes, Atrial Fibrillation, Hypertension)
  • Significant medical events (ex. fall, stroke, surgery,)
  • Hospitalizations over the past year with dates and duration of stay
  • Diagnostic testing and results over the past year

This information will provide the base to work from as you build a basic health history.  This is also information that you will be asked to provide repeatedly if there are continued medical issues or a medical crisis. Apps like alska make it easy to store this information or share it with others in your care team.

 

Make it known you are the person to contact in a medical emergency.

Whether your loved one is living at home or in a care facility, make certain they have your name and current contact information in case of an emergency.  It is best if you also have a back up emergency contact in case you are unavailable for some reason.

 

Prepare for medical appointments.

When you know you have an upcoming appointment, it is important to prepare in advance so things will go as smoothly as possible and you can make the most of the time you have with the physician.  Stay focused on the purpose of the appointment and write down any questions you have and would like answered.  If there are new tests ordered, new medications prescribed or a new diagnosis, make sure you are clear about next steps before you leave the doctor’s office.  Don’t be afraid to ask questions.  Health care providers expect you to have questions and should be happy to answer concerns you may have.  If there are obstacles to anything the provider suggests, let them know as there may be alternatives they can offer. For example, if an outpatient test or procedure is going to be scheduled too far from where you live, let them know rather than cause increased stress of figuring out logistics.  There may be other options available that work better for you and your loved one.

 

Stay calm in a crisis.

This is easier said than done but it is one of the most important components of advocating.  The individual you are providing care giving and advocacy to, is likely to be in a somewhat vulnerable position. Whether this is because of advancing age, a chronic illness or a health crisis, this vulnerability almost always means they aren’t as able to deal with stress as they once were.  Being the “shoulder to lean on” will be one of your most important and valuable tasks.  This isn’t always easy but try to always keep a perspective and stay positive even in the midst of bad news or a frustrating experience.

Do your best.

It’s all you can do! Care giving is hard, in a multitude of ways and nobody does it perfectly.  When things seem unmanageable, get back to the basics and ask yourself, is your loved one safe, healthy and relatively happy?  If these basics are covered you have done your job even if just for that particular day.  In the words of Scarlett O’Hara, “Tomorrow is another day.”