We all know caregiving is complex.  So much to learn, so much to do, and so little time.  This may surprise you.  But, through personal experience, I believe the most critical skill for a caregiver, regardless of diagnosis, is good communication.  Understand that effective communication will always be a work in progress, a goal to strive towards.

You, as the family caregiver, are the super-connector for all your loved one’s physicians, service providers as well as family members and friends who care.

At times, you will feel as if you’re being pulled in 100 different directions by all these entities.  They are not trying to make your life hard (although it may feel that way).  They are simply trying to get the information they need to best help your loved one.  And, of course, there will always be the protocols and regulations to which they must adhere.  Remember this:  you are all working on behalf of the best interest of your loved one.

So I offer up the following pointers for good communication. Guidelines I try to follow.  I’ll use communication with my husband’s neurologist as an example.

1. On a daily basis, I keep a personal notebook (for my eyes only), recording vitals and other key information at each provider visit. (PCP, PT, OT,  palliative care team, and nurse manager at memory care.)   I also record information related to each event (falls, unusual eating or sleep problems, dizziness, etc).
2. Before each appointment, I set aside time to review my notebook and prepare for the appointment. I list key events and the top 3 concerns that I wish to discuss.  Fortunately my husband’s neurologist is with UCHealth which provides a robust patient portal.  I submit my top 3 concerns via the portal before the appointment.
3. Day of the appointment, I bring along a packet with printed copies of any additional relevant information. I ask to speak to the intake nurse in the hallway first, and hand over my packet.  This last appointment, my packet included name and address of the new memory care, recent labs, low b/p event reported by PT, and a report by the mobile dental hygienist.

4. 

   The hardest communication piece for me is to keep my mouth shut during the exam. It takes a long time for my husband to process each question and formulate his answer.  When the neurologist turns to me to discuss, I will often rephrase what I believe she has said so I ensure I understand.  There is so much information exchanged during our hour visit, she always ends up correcting me.  You must speak up and get confirmation or correction.
5. And then there is the post-appointment follow-up. This is a very important piece as you may need to get clarification, report reaction to new/adjusted meds or ask for more resources.

My advice: Ask each physician or provider how best to communicate with them.  Believe me, they will be most appreciative.  I recently asked the nurse manager at Bill’s new memory care how best to communicate.  She prefers quick questions through text message and likes a monthly one-on-one with each family.  We went ahead and scheduled our monthlies right then and there. (Katherine’s note: I would like to add the idea of recording all of these conversations so you can go back and ensure you heard them correctly.)

I hope these pointers help you as you super-connect on your loved one’s behalf.  Becoming a skilled communicator will help your loved one get the best care possible.  And something amazing may happen along the way…. you and the physicians/service providers may become “partners in care.”