Credit: Jill Nance / The News & Advance
LYNCHBURG,VA – Bishop Philip Weeks places his hands on the arms of the chair and leans down to face his wife, June. “Do you love me?” She continues singing the soft, garbled song that only she can understand. “Fifty-six years tomorrow is our anniversary. How about that?” He leans closer and smiles. She smiles. “She’s the nearest thing to perfection that I’ve ever known,” said Weeks, as he sits on a small couch across from June.
When he looks at her, he still sees the feisty woman he had to ask four times to marry him before she finally said, “yes.” Love is blind. Alzheimer’s and dementia slowly swept that June away years ago, taking first her memory, then her daily walks and now her speech.
Weeks, a missionary priest for decades, retired from his role as a charismatic Episcopal bishop in 2005 to care for June full time in their Lynchburg home. Today, 10 years after the first diagnosis, June has vascular dementia and Lewy Body Dementia, a unique disease with unique symptoms such as hallucinations and a decline that is anything but gradual.
There were times when June was convinced the bears on the television screen were coming to attack her or there was a stranger in their bedroom, despite her husband’s efforts to convince her otherwise. Medication that most dementia patients never need finally quelled the fears. “I tell people she’s speaking in tongues to the angels,” Weeks said, as June begins to sing again. Occasionally a word or two he recognizes, like ice cream, slip into a verse and Weeks perks up as if they were spoken just for him. Maybe she is looking forward to ice cream for dessert. It’s part of their nightly ritual once the nurses have departed.
During the day, the nursing assistance is essential, lifting, clothing and bathing June because Weeks can no longer do it alone. And each day he sells a few more belongings ”” his coin collection, her jewelry ”” to pay for her care. Expecting they would reminisce of their travels as they aged, Weeks was not prepared physically, emotionally or financially for June’s illness.
In 2009, following the diagnosis of Lewy Body, he began blogging, hoping for nothing more than to share his story, maybe helping someone the way he wished he had been helped. He heard from people around the world, getting advice and questions alike. “It was a lot of personal stuff that I put in there like not knowing how to handle it when she would stop eating,” Weeks said. His support groups were polite places, held in rooms where people didn’t talk about nausea, vomit, diarrhea, anger and running out of money. Support groups don’t talk about the bad times, he said. But in his blog, Weeks could lay everything bare, from the lack of church support to his own loneliness as he began to find himself unable and unwilling to leave June’s side. While away, he would call repeatedly to check on her condition.
This month, Weeks released the book, “A Long Dark Night ”” A Caregiver’s Journey with Dementia,” which grew out of his blog.
The $12.99 is self-published through the company Createspace. He created his blog on the website wordpress.com. “June is my ministry now. My caring for her has given me a different perspective on the meaning and essence of love,” he writes in the book.
Inside, he reveals how the disease has hurt both he and June, with the hope that others can learn from his mistakes. “She was the perfect pastor’s wife,” Weeks said. Together they traveled the world on missionary trips. June worked with the wives in the churches they visited, sang in the choir and stayed long after church, sitting in the pews praying for her husband as he prayed for others. June was an unstoppable force. A professional nurse, she sewed, sang and painted like a professional, Weeks said. “She could do anything, just a really gifted lady,” he said.
Sitting in the back row of church two weeks ago, attending the funeral of a friend’s wife lost to Alzheimer’s, Weeks found himself racing to the exit, unable to stop thinking of June. “I just thought about what was coming and I couldn’t take it,” he said. The hardest part of all of this, he said, will be “eventually saying goodbye.”