How can I get my father to accept his Parkinson's diagnosis?

A fellow caregiver asked...

I care for my parents, both of whom have serious medical issues. Mom is fine and accepts her situation which is truly a blessing. However, does anyone have any hints on how to deal with Dad? Nearly 2 years after being diagnosed with Parkinson's he'll still say, "Well, they ~tell~ me I have Parkinson's". He is so deep in denial about all of his changes, both physical and mental, that it's very hard to deal with him. For example, he insists that despite having been told via a professional assessment that he is not to bend over to the floor because of loss of balance and coordination, when he has an bowel accident (requiring 50 minutes in the bathroom!) he insists he can get down and clean up the floor and toilet. It is impossible to trust that he's being careful because he is in such denial of his situation. I truly do understand that he's proud and he has long said that he "will not go gentle into that good night", but he makes it so difficult for everyone, family and caregivers alike, because in order to insure his safety we must watch him like a hawk. He feels like we hover, and we feel like he cannot be trusted because he refuses to acknowledge his reduced physical and mental capacities. I've long known that he would be the 'problem parent' but this is the one issue that truly creates problems for everyone. I've tried telling him that maybe if he "took control of his life" by acknowledging his needs he could still dictate what he does (e.g. decide I'm going to be sure I take my medication on time so caregivers don't have to baby me with multiple reminders rather than blatantly ignoring the reminders), but he refuses even that. He's an exceptionally intelligent man but no longer acts like it, by disease or perhaps by choice, it's hard to tell. I love him deeply but find it very difficult to respect the same things in him that I've always respected. Thank you for your help.

Expert Answer

Graham A. Glass, MD, is the co-founder of PEAK Neurology and Sleep Medicine, LLC with multiple locations across Alaska. Previously, he was deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center PADRECC and assistant clinical professor of neurology at the University of California, San Francisco (UCSF). Glass received his medical degree from the University of Texas Health Sciences Center at the San Antonio School of Medicine and completed his neurology residency at Tufts-New England Medical Center. He subsequently completed a fellowship in movement disorders at the Mayo Clinic.

Accepting the diagnosis of Parkinson's disease and the physical limitations that may result is occasionally very problematic for patients. As you well know, this often results in a fair amount of turmoil for the family and can result in injury or overall reduced quality of life for the patient. On many occasions, the denial of the diagnosis and physical limitations as well as impulsivity can represent cognitive changes associated with the disease. Parkinson's and some of the "atypical Parkinson's syndromes" can affect the frontal lobes in the brain that are responsible for executive function (i.e. making good decisions), motivation, impulsivity etc. If a patient has been given a diagnosis by a practitioner that they trust, has had friends and family that they trust re-iterate the diagnosis, limitations and need for medication, and still behaves in this manner, we will usually pursue "neuro-cognitive testing" to determine if there are limitations from the disease itself in the parts of the brain that allow patients to accept things and act accordingly. This sounds like it may be the case here.