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

4 answers | Last updated: Oct 07, 2016
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 Answers

Graham A. Glass, MD, is the deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center (PADRECC) and an assistant clinical professor of neurology at the University of California, San Francisco (UCSF). He 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.

Community Answers

Ladydawn answered...

Rather than struggling to get your father to accept the diagnosis, are you able to treat the symptoms and side effects?

For example, since he is having accidents, are you able to get him to wear protective underwear? This is a very embarassing situation for him and if he had a covered, lined waste container in the bathroom, perhaps he would not be needing to clean the floor since he could sit and remove the protective pants.

Perhaps it would be possible to have family counseling sessions to address the denial and possible depression he has about the diagnosis.

He may be having difficulty learning the "new tricks" he is going to need but the sooner you begin, the easier in will be for him to learn the patterns - you are going to need them later.

Has the bathtub or shower area been installed with grab bars? Not the suction cup style but either screqw in to the type that fastens to the side of the tub? Is there a hand held shower with a long hose and an on/off button on the handheld itself? That and a shower seat might help him to clean himself if necessary. You can practice with him fully clad in order for him to learn the motions.

Is he on any medication? Nutritional supplements? He does need treatment and therapies? How about aquatherapy to help with balance? Perhaps medical massage? With those endorphins going, he might be more receptive to the reality of his world.

Also is he drinking enough fluids? He sounds as if cognitive reversion could be caused not just by the PD but by dehydration since my guess is that he has urinary frequency or hesitancy which contributes to bathroom accidents.

Is he being mentally challenged with puzzles or word games? What does he do during the day? Is he worse at any particular time of day?

I realize that this is a struggle for you and that his attitide makes all the more work for you. Reassure him that he is loved and respected for the person he is before asking him to help you to help him.

Momkelly2 answered...

my mom had a huge fear of falling.. and would not do anything if she was afraid she would fall.. but as the parkinsons prgressed she thought she could get up and walk. and fell several times because she was wrong.

even days before her passing.. fully bed ridden, she was going to the bathroom.. I said mom you can't.. her reply "well I just did! and I am going again. I sat back and said well go ahead. of course she couldn't even sit up with out help by then.. so I knew I was safe to say it.

I wish I had a better answer for you. dementia sets in and they begin to live in an altered state. and they forget what they can and can not do. short of restraints.. can he use a walker.. but bars on either side of the toilet so he can hang on.. or keep him from falling.

Quince answered...

My Wife took about 4 years to finally come to grips that she had Parkinson's disease. She was about 47 years old. She will be 78 in May. My only answer is that it can take a long time before it becomes evident to the patient