Creigh Lidiak shares how she advocates for her loved one when communicating with healthcare teams when she feels he is not receiving urgent enough treatment.
Transcript
Most of us are with him 24/7, and we know our person better than anyone. What bothers me most is when I can see we’re headed toward something bad. I’ll contact a doctor, and the response is always, “Well, if they have difficulty breathing or another symptom, take them to the ER.” I’m trying to prevent that. The ER is the worst place to take someone with a compromised immune system. You don’t want them there.
Let’s be proactive rather than reactive. If we see these things happening, you need to trust that I’m with him and notice the little subtleties. I know when we’re headed toward something serious. Let’s do something in that moment rather than waiting until it gets out of hand. That’s what’s important, and it’s what has frustrated me about dealing with doctors.
I talk to doctors and use the patient portal a lot. When I’m not getting the response I need, I research what I can do to help strengthen him. If one doctor isn’t giving me the answers I want, I go to another—maybe his primary care doctor—or keep reaching out until I get an answer.
I don’t stop, and I’m always polite. I thank them and say, “Sorry to bother you.” I never get aggressive, though I may get a little firm because I’m really seeing what’s happening. If I’m not getting the response I feel I need, I move on to the next person. I don’t take no for an answer. I know what he needs, and I keep going. I’ve kept him out of the hospital many times because of that.
