Caregiver support: What to do when the doctor won't listen to the caregiverJan 27, 2023 10:21AM ● By Dr. Laird Landon, PHD
Dear Laird: My brother’s Alzheimer’s is advancing rapidly. The problem is that he doesn’t tell doctors the truth about his issues, so the doctor can’t give him good advice or treatment. He gets mad when I try to help. Plus, the doctor doesn’t pay attention to me anyway. It’s like I am not even in the room even though I am the one who takes care of my brother. Signed, Jim
Dear Jim: Unfortunately, many medical professionals don’t really understand the caregiver’s role in situations like yours. In this case, there are three people in the room. I call it the Therapeutic Triangle—the patient, doctor and caregiver. Each has a role. Here are a few ideas that may help you better communicate with your brother’s doctor:
When entering the exam room, sit to the side and slightly behind your brother. You will be able to signal your thoughts to the doctor without your loved one noticing. This could relieve conflict with your brother and help the physician to better help him.
Have a written plan for each visit and have it visible so the doctor can see it. Have your questions written down in advance and be ready to share your own challenges and feelings. Ask for clarification when you don’t understand something and take notes. They will help you remember, help you explain to your family and help you remind your loved one if they forget. Before you leave the exam room, review your questions to see if you missed anything important.
Show your desire to cooperate. From time to time, repeat the doctor’s words so you both know you understand. Have an open posture and nod. When you have a question or want to say something, wait until the doctor is through talking. If the doctor does not pay attention to you, interrupt with a positive statement. “I’d like to help answer your question. I understand what my brother is saying and here’s another take on that.”
Keep a log of your loved one’s behaviors, your concerns handling them and your own feelings. Add your best examples to your written plan.
If you do not want to upset your brother or you want more advice on how to give care, ask for an appointment for yourself. Most doctors will agree to see you even if they are not your personal doctor. In that visit, you need to be very candid about what you’re feeling and thinking: how much sleep you’re getting, if you are losing your temper, or wonder if you can keep going.
Be a part of writing the care plan. A good care plan is an agreement about when and how care is given. It includes the activities of daily living (eating, bathing, dressing), when more help will be needed as your loved one loses function and end-of-life care.
I can’t cover everything about the Therapeutic Triangle, but we have a three-part video series about it at Family-Caregiver.org
Watch the first video below.