When Janie was a teenager, my mother was one of her Sunday School leaders. When I became a teenager, Janie was one of my leaders and I babysat for Janie and Steve’s kids.
I was teaching myself to play my brother’s guitar back then - a generic solid body with a small amplifier my dad had picked up at a garage sale. I practiced every day after school and on weekends and played till my fingers bled. I watched my friends who played for our church and they gave me tips and let me play their acoustic guitars sometimes. Steve was one of those friends.
One night when I went to babysit Steve and Janie’s kids, Steve said I could play his guitar after the kids were in bed. Steve had a nice little Yamaha classical and those nylon strings were so much easier on my fingers than the steel strings of that electric guitar. I told him I was saving my babysitting money so I could buy one of my own. He said he didn’t play his guitar very often so he wanted me to take it home and borrow it for a while. I was ecstatic. I played Steve’s guitar for about six months until I got a guitar of my own.
Thousands of people have heard me play guitar for Sunday Schools and church services, summer camps and student meetings plus a few weddings thrown in for good measure. I even wrote a few songs of my own and recently found some old friends on Facebook who remembered them. It’s not that I was ever that good at it. I was just willing and available.
Sometimes, when nothing else can calm my inner storm I take out my guitar and spend a few minutes playing an old familiar song about God’s love and grace. It’s like taking a deep breath, spiritually. I can’t imagine not being able to do that. Without Steve’s confidence in me and the loan of his guitar at just the right time I might have given up and never learned to play.
My friend, Steve, has Alzheimer’s Disease. He was diagnosed when he was 60 years old. He’s only 64 now but he can’t live with his family anymore. He doesn’t always recognize them when they visit him in the nursing home where he lives. Caregivers there are trained to deal with Alzheimer’s patients when they become aggressive but Steve is especially challenging. After teaching martial arts for over 30 years he is quite adept at defending himself. He can’t understand that they’re trying to take care of him.
Steve and his son, Jay, used to teach eight martial arts classes a night on two mats in one of the largest Karate schools in the state of Texas. Steve shared with his students the things that were important to him. He quoted scripture, told Bible stories and often brought his guitar for a jam session with the kids at the end of the evening.
Because of Steve’s ADHD, it wasn’t unusual for him to ask for Janie’s help finding his keys or other things he’d lost. During routine check-ups his doctor would say, “Oh, does Janie think you have Alzheimer’s again?”
But then Steve began to lose track of details on the job. When he had to ask Janie for directions to the dentist they’d been seeing for years she was worried. When Steve panicked at the thought of Janie going out of town for a couple of days she canceled her trip and called the doctor the next day.
Steve knew what he was facing when he got his diagnosis. His mother had died of Alzheimer’s years before. More is known about the disease now and Steve was able take medication to help slow the onset of symptoms. That helped for about a year. The younger the patient when diagnosed, the faster the disease progresses. Steve can no longer speak in complete sentences.
I remember Steve as young, handsome, energetic, talented, a loving father, a faithful friend. When Janie found me on Facebook recently and told me about Steve’s Alzheimer’s diagnosis my heart broke for Steve, Janie, and their family.
If you look at Janie’s Facebook page, you see her smiling face and photos of her children and grandchildren. And every now and then you can read comments about her family’s experience with Alzheimer’s and encouraging words from her friends who have gone down this road with their own loved ones.
“It’s not just being forgetful," Janie says. “It robs them of their personality and their passion.” Steve stopped playing the guitar. Then he stopped karate. Because of their experience with Steve’s mother, Janie knew that it would be hard. “But it’s different when it’s your spouse. The person you’ve confided in and looked to for support is not there anymore.”
It was about two years ago when Janie realized she’d have to quit her job and stay home with Steve full time. She got a call from the Sheriff’s department while she was at work. Steve had wandered down the road from their house and knocked on a neighbor’s door to ask for help getting back home. Three days later, it happened again.
Janie had always considered herself to be a private person, but the stress of taking care of Steve took its toll. She kept telling herself, “It’s not Steve, it’s the disease. It’s not Steve, it’s the disease….” She finally started confiding in friends at church, letting them encourage and pray for her. She says, “You have to give yourself permission to be frustrated.” She felt guilty when she moved Steve to the nursing home, even though she knew she couldn’t care for him herself anymore. He was far enough away that she couldn’t visit him every day so she turned her attention back to her own life. She started taking better care of herself and found a new awareness of God’s leadership in her life. Janie recommends that caregivers find an Alzheimer’s support group and seek out resources like the book, The 36 Hour Day, a wonderful resource for caregivers of patients with Alzheimer’s and Dementia.
They call it the “Silver Tsunami”. More than 10,000 baby boomers turn 65 every day. One in eight people over the age of 65 has Alzheimer’s. Unfortunately our health care system will be faced with a lot more Steves and Janies in the coming years. I urge you to read this article about the impact this will have on our health care system: http://dallasne.ws/Ikh8rC
The 2012 Alzheimer’s Advocacy Forum is underway in DC this week. Over 700 representatives from all 50 states have gathered to urge our government to take action on Alzheimer’s issues. As we approach the elections in the fall I hope you will consider candidates who will work to find solutions for those who cannot help themselves.
Alzheimer’s has taken Steve not just from his family. It’s taken my old friend from me. Over the years I’ve been delighted to reconnect with friends from the church of my childhood, whether online or in person. I talked with Janie recently, catching up on the news of family and mutual friends. I was comforted by her memories of my mother, when she was young and strong, thinking of all the young people she encouraged, like Janie. I am so glad we’ve renewed our connection.
But I can’t talk to Steve anymore. The Steve I once knew is gone. I can’t tell him about all the years I played my guitar because he loaned me his. This disease robs the world of all that Steve might have continued to do to be a blessing to his friends. It has robbed Janie of her closest friend and encourager with whom she has shared the past 48 years. Jay and Shannon will tell their children about their grandfather but Steve can’t be there for their ball games, karate matches, graduations or weddings.
Some leave us slowly, their strength fading even as their memories and personalities persist. Some leave us suddenly and unexpectedly, with no chance to say goodbye. In both circumstances we mourn the passing of those who are no longer with us.
Janie is mourning her husband and best friend, Steve, the man she visits as often as she can, whose care she entrusts to trained professionals. It is difficult for him to speak now but sometimes he’ll look at her and say “I love you.” But the Steve she knew is gone.
If there is a Steve in your life, my heart goes out to you. If there is a Janie in your life, I pray you’ll offer your support and prayers. And if you have something to give, please make a donation to help fight this terrible disease through research, support programs and services.
Thank you, Janie, for the use of your photos.