The Benton Family

Chip and Carrie: Finding Gratitude in a Difficult Diagnosis

Nov 23 2020

Even when we are going through a heart-breaking situation in our lives, the holiday season is a great opportunity for us to reflect on our blessings and what we are grateful for.

This could not be truer for the Benton Family at this time. As dad and husband, Chip, battles a rare form of dementia, his wife, Carrie, and their children have banded together to support one another. They have found that they have many things to be thankful for, one of them being their Mercy Health care team.   

Read Carrie’s firsthand thoughts on Chip’s health journey here:  

“An orthopedic specialist with a very keen eye was the first person to notice that something wasn’t quite right with Chip’s cognition. During an appointment scheduled for shoulder pain, the doctor asked about the muscle twitches in Chip’s shoulders. He ordered an MRI of Chip’s brain and shoulder. From there came a referral to neurology, which then led to a referral to an ALS clinic and brain center.

After months of blood work, EMGs, lumbar puncture, a neuropsychological evaluation and so much more, we found ourselves in the office of a large academic center far from our home in Lorain, OH. There, a doctor shared that Chip had frontotemporal dementia (FTD) which was causing motor neuron issues.

‘Think of your brain as a computer, with the part behind your forehead being the microchip,’ the doctor said. ‘Yours is broken.’

From there, Chip naturally asked what we needed to do to fix it.

‘Currently, only your upper motor neurons are affected,’ the doctor revealed. ‘However, FTD is progressive and fatal. There is therapy and care you can receive to help you enjoy what’s left of your life. But you’ll also need to get your affairs in order.’

The process of this doctor delivering Chip’s death sentence took all of five minutes. Chip had just turned 52, our two kids were in college and this was supposed to be our time to enjoy together. Yet here we were, needing to prepare for Chip to die. I married Chip my senior year of high school and finished college while raising a family. The thought of living life without Chip absolutely hurts my soul.

We were given orders for physical therapy, occupational therapy, speech and palliative care. However, a few days after returning home, I hadn’t had a chance to schedule these appointments and couldn’t manage Chip’s pain. We ended up in the emergency room at Mercy Health – Allen Hospital.

Dr. David Rickson sat down in front of us. He recognized my exhaustion just as quickly as he was able to get Chip comfortable. He explained palliative care to me, and then took it upon himself to schedule Chip’s physical therapy, occupational therapy and speech appointments before we even left the hospital. I never even asked Dr. Rickson for help, he just knew I needed it and stepped in. He was so kind, attentive and treated us as a whole.

I was convinced our overly positive experience with Dr. Rickson was a rare occurrence though. Going into our other Mercy Health services, I did not have high standards. However, I’ll be the first to admit that I completely underestimated them.

First off, physical therapy team members came to our house. This was to give me advice on ways I could accommodate our space to make it more accessible for Chip. I am also so grateful Chip has been able to receive his services and therapies at home.

We have so many Mercy Health members on Chip’s care team, and I don’t know what we would do without each and every one of them. They include Stephanie Conrad, Brian Tyras, Jimmy Ward, Travis, Marissa, Kim Bainbridge and Jen Cypher. We are beyond thankful for this team and truly believe they are the reason Chip’s quality of life continues to be excellent.

There is a difference between living and being alive. And as Chip has said from day one, you don’t have to learn you are dying to start living. Chip was in fact born at Allen Hospital, long before it was a Mercy Health facility. I find it so fitting that Chip is turning to this hospital again during this phase of his life.

There is no denying that Chip has a fatal disease. But with the help of family, friends and an amazing care team with Mercy Health, he is not dying today. They show grace to Chip and to our entire family during every visit and phone call. While there is a lot that’s discombobulated with health care these days, our Mercy Health team gets it right every time.

I’m so thankful to have the team we do to help guide us in the right direction with all of this. I typically feel like I have zero idea what I’m doing any given day, and always just pray I’m doing right by Chip. Having our Mercy Health team to support us in this journey has been the ultimate blessing.”

Learn more about the health care services we offer at Mercy Health and find a provider near you.

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