02- May2017

Chasing a Diagnosis

I sat in my driveway, hanging on to every word Jason spoke while the rain beat down on the roof of my car.  He had called 10 minutes earlier to get advice on a recent diagnosis of dementia his father had received.

“We just don’t know where to go from here.” his voice cracking as he choked up over the words.

As we talked he shared with me the symptoms he had noticed over the past 6 months and the increasing care his mother had needed to provide.”

She is exhausted”, he continued,  “…I am pulling double shifts and spending the weekends over there to relieve her, but we are at our wits end.  He just shuffles around, gets lost, sits in the bathroom for hours at a time during the middle of the night.  What could possibly be wrong with him?”

I asked what type of doctor his father had seen and if there were future appointments or tests scheduled to identify his dad’s sudden onset of symptoms.

“They just said it was dementia, maybe Parkinson’s, but no, there are no future plans to find out more. Why? Should there be?”

I stopped in my tracks and assured that Jason had my full attention, “It is not only important, it is critical that your dad gets followed up with a specialist.  I suggest a neruorogist and whatever testing they feel is necessary to get the proper diagnosis.  Your dad’s quality of life and treatment options depend on it.”

With that, Jason scheduled more appointments. We stayed in touch as more testing was conducted.

One afternoon, a few weeks after our initial call, he texted me with an update.  His dad’s symptoms had worsened and required first responders to rush him to the emergency room.  While his dad was in the radiology lab in the E.R.  for an MRI, the doctors told the family they were pretty sure it was just “plague build up” and “…nothing that could be diagnosed until postmortem.”

Two hours later Jason texted again. A 6 cm brain tumor had been identified on the left side of the brain, potentially inoperative.  Chemo and radiation were options, but most likely his father had less than 6 months left to live.

Our conversation quickly turned to the importance of quality of life, precious time his dad had left to share in connection and love.  We talked hospice and palliative care.  Jason took on the job of ensuring his father was comfortable and out of pain.

It was wonderful to see social media pictures of his dad, cared for by round the clock nursing and surrounded by family, smiles, laughter and hugging.

6 weeks after our initial call, the day it rained so hard I stayed in the driveway to finish our conversation, Jason’s dad died.  Jason reported that he was comfortable in his own home, surrounded by those who loved him and grateful that the past weeks were spent in celebration of a life well lived and not chasing a diagnosis.

Also Read: Five Reasons To Get A Diagnosis Beyond Dementia