Shared story: We are coping, but this disease does not pause or stop
Today’s Shared Story is by Ray Flanigan who lives in Bethel, Connecticut.
He is owner of Bethel Photoworks and operates Sweet Potato Ray where he serves
as a whole-food, plant-based coach.
Five seconds early one 2014 morning changed our lives forever. A young man sped out of a gas station on route 67 in Litchfield, Connecticut, from behind a parked school bus with no possibility of seeing that my wife, Juleen, was coming toward him in the lane he was entering.
Ray posed with Juleen at Maplewood at Stony Hill, where she’s been living since November.
Although she was probably driving no more than 25 mph, the impact of his Ford F-350 smashing into the right front corner of her Acura shook her violently from side to side. Her life was saved by the airbags that bruised her sternum, gave her a concussion, and rattled her optic nerve.
Early problems
In the days that followed, she experienced headaches, dizziness, and blurred vision. But she had no broken bones or cuts, and we assumed a few days of rest would see her back to normal. Soon, however, the doctors recommended physical therapy and occupational therapy. And within three years after the accident, she was beginning to forget appointments and have trouble using her iPhone and the internet. Cognitive testing in the spring of 2018 brought back a report of “possible signs of dementia.”
We began eating a whole-food, plant-based diet, believing that what’s good for your heart is also good for your brain. A doctor recommended new attention to sleep, exercise, meditation, vitamins, and probiotics as possible means of slowing the progression of dementia.
Nevertheless, Juleen felt she had no choice but to retire from her job at Education Connection where she had worked in both the Litchfield and Danbury offices. A succession of retirement gatherings brought testimonies from the mayor of Danbury, school superintendents, retired coworkers, and those she had trained to carry on the work. All expressed how well-respected she was across the entire state of Connecticut.
New diagnosis
Meanwhile, Juleen had undergone genetic testing, with the result that she does carry the APOE4 gene on both her mother’s and her father’s side, a major risk factor for developing Alzheimer’s disease. This led to another round of neurological testing, and we returned three weeks later for the results. I took one look at the doctor as he approached us in the waiting room and knew this was not going to be good.
His report was brief and to the point, almost nonchalant: “Based on your tests last year we had diagnosed you as having possible dementia, and based on your most recent tests, we have determined that you have Alzheimer’s disease. Any questions?”
“We have plenty of questions,” I said. “First, what can we do?”
The doctor replied, “Well, she can take donepezil and you should find a support group; there’s one in Ridgefield.”
I mentioned our doctor’s recommendation of nutrition. exercise, music, meditation, and some supplements.”
His reply: “Well everyone is trying to sell you something.”
We never went back to that doctor or that practice. Through a friend of Juleen’s son, we were referred to the Adler Center at Yale, where we have felt cared for throughout regular visits over the last four years.
Heartbreaking decline
The decline in her condition in that time has been heartbreaking to witness. Last February we took off on a drive to see family in Charlotte, North Carolina, a 700-mile trip. But as we were getting to the Mario Cuomo bridge (45 minutes into the trip), Juleen was saying she needed to get home to see her husband, Ray. I tried to assure her that I was her husband, but to no avail. I trudged on through what was a very difficult 12-plus hour drive, and we wound up staying only the weekend and returning home.
At church on Christmas Eve.
Since then, I have been forced not to allow her to drive, even locally, and I’ve hired caregivers and found volunteers who have provided relief for me, help for Juleen, and support for us both. Juleen began taking piano lessons, and a bevy of St. Mary’s church friends have made sure she could continue her lifelong habit of daily mass attendance. She was picked up every morning for the service. Assembling the team of helpers to make this possible took time and work, and I could never thank them enough for what they’ve done for us since last February.
The situation today
But this disease does not pause or ever stop. The times of Juleen not recognizing me as her husband became more frequent. She packs and unpacks her suitcase. One morning before dark I found her outside in the cold waiting for a ride. Her sleep became more and more erratic.
The situation had become unmanageable. I considered hiring a live-in caregiver, but the one agency that could provide one said the caregiver would not drive or wake during the night.
She moved into a new, larger room last week and I brought her our electric piano to enjoy there.
Finally, I settled on Maplewood at Stony Hill in Bethel. Residential care for Juleen there would actually cost less than a live-in caregiver at our home. Juleen moved there the Wednesday before Thanksgiving. She’s living now on a floor with others deemed to be in the middle stages of the disease.
I was able to bring her home at both Christmas and New Year’s and even considered bringing her back home for good until our New Year’s Eve went south and she had no idea who I was.
So now I visit her every morning, have coffee while she has her breakfast, and then watch daily mass with her on TV.
I am part of a weekly Zoom-based support group and have discovered help from Teepa Snow (find her at Teepasnow.com) and her Positive Approach to Care. I’m asking friends to pray for us as we go forward, managing the best we can.
Starting next Monday, January 16
