Randall Murphree
AFA Journal editor
February 2012 – Disease is sometimes brutal, sometimes subtle. It may attack with sudden vengeance, symptoms running amok, health plummeting. More often, it is a silent stalker, a subtle intruder slipping quietly into a body or mind with a series of little things – an occasional numbness, a forgotten detail, a strange tingling – little symptoms we’re inclined to attribute to normal aging.
But those annoying symptoms may be good reason for a physical exam. Could it be Alzheimer’s? MS? Cushings or Parkinsons? Dementia?
For Dick and Elizabeth Peterson, multiple sclerosis was the subtle intruder. Even in the early stages of MS, they experienced numerous frightening and humbling occurrences. For example, she once fell and, too weak to get up, spent an afternoon on the closet floor waiting for Dick to arrive home from work.
“It happened so gradually that Elizabeth and I hardly knew anything was wrong,” Dick wrote years after his wife’s 1995 diagnosis at age 50.
In the early 1990s, Elizabeth would experience mild fatigue, an occasional fall – nothing to be too concerned about, she thought. She simply must be more careful. A lively, active and well-loved English and Latin teacher, she continued teaching, first using a cane, then a walker, a scooter and eventually a wheelchair. Finally, the physical demands became too much.
“My biggest challenge,” Elizabeth said, “was not knowing how much of my independence I would be able to retain. I have had to go from a ‘can do’ person to a ‘cannot do’ person.”
“I remember one occasion when she accompanied her students to a national Latin competition at an out-of-state university,” Dick told AFA Journal. “She collapsed and had to be helped to the bed in her dorm room and left there while her students went to the scheduled event.”
As Elizabeth struggled to maintain some normalcy in her life, the challenges were often not only humbling, but also humiliating. Once, while suffering from a severe cold, she tried to go from her bed to the bathroom. Weakened by fever, she crumpled to the floor. Dick remembers struggling to get her back on the bed where he could put pads under her to protect the mattress.
For those who find themselves requiring such major care, Elizabeth recommended: “Put life into small increments of time, rather than trying to see the situation long term. If I think too far into the future, my emotions determine my thoughts and my thoughts my behavior.”
She also urges care recipients not to read too much into every little sigh or questionable tone of voice from caregivers. Allow them to have their ups and downs, too.
Missing the warning signs?
Dick’s career as a journalist had taken them to South Carolina, where he began working for the public relations office at the Medical University of South Carolina-Charleston in 1984.
“Four days after I started work at MUSC,” Dick said, “Elizabeth was admitted to the hospital there for severe depression, later diagnosed as bi-polar disorder.” She was hospitalized for three months. Ironically, in1989, her depression – bi-polar symptoms and all – disappeared after she lost access to her medication when Hurricane Hugo hit the area.
The Petersons are now convinced that depression was a misdiagnosis, and this was her first sign of MS. Elizabeth’s MS is categorized as secondary progressive, meaning that its impact on the body progresses more gradually than do other forms of MS. That’s why she was able to continue teaching until 1999.
“In the period between 1999 and 2005, we did all we could to keep her as independent as she could be,” Dick said. For example, she experienced some paralysis, but with a left-foot accelerator, she could still drive. Nothing was easy, but Elizabeth was not one to sit at home when she could still drive to pick up their grandson from school in the afternoons. Or lead support groups to help others.
To cope, Elizabeth advises both care recipient and caregiver, “Develop a sense of humor. Many times we’ve been able to break through a wall of despair by finding humor in a situation. For example, Dick sings an ‘oldie’ such as ‘Slip Slidin’ Away,’ when he is lifting me and my feet begin to slide, or ‘Stand by Me’ when I need to stand beside my wheelchair in crowds.”
“A Summer Song,” another oldie, warns “ that all good things must end some day.” Dick and Elizabeth were 20-year-olds listening to the mid-1960s pop hit by Chad and Jeremy. Now, 35 years later, their journey had brought them face to face with the end of yet another good thing. Elizabeth had to relinquish her driver’s license.
Meeting new challenges
The Petersons downsized to a smaller home near their daughter, and in 2005, Dick retired at age 60 to be his wife’s full-time caregiver. What exactly does he have to do for her? He dresses her. He looks for and tries out new recipes. He folds and puts away her lingerie. He assists her in the bathroom. Where does a 66-year-old get the strength for such a challenge?
“Psalm 121, of course,” Dick said. “You expected that, didn’t you? Our help comes from the Lord – through His people, in our church. They are His body and they amaze and humble me.”
He admits that sometimes, he worries a little about a future in which he can no longer handle the job alone. How does one deal with fear? Dick cites Hebrews 4:9-16, and declares that “faith-rest” is his antidote for fear: “By faith, I rest in the fact that God is more interested in my (and Elizabeth’s) well-being than I could ever be.”
The Petersons have found numerous resources that offer help and hope. State agencies have provided equipment, and Elizabeth initiated an MS support group in their hometown of Summerville, South Carolina. Still, at the top of Dick’s support team is the Crossroads Community Church.
A major ministry there is to care for wounded people and their caregivers, assisting with transportation, buying groceries, picking up meds, visiting with the patient to give the caregiver a break and meeting other daily needs.
At a Someone Cares Conference in 2008, the Petersons met Steve Siler, a Nashville musician and founder of Music for the Soul, a ministry addressing hard issues with which people struggle – issues like caregiving. MFS’s earlier projects include DVDs offering help and encouragment to those suffering with cancer, substance and porn addictions, and other critical life issues.
During that conference, Steve began to see possibilities of using his gifts to minister to caregivers and the terminally ill. His Dignity DVD is the result of that new vision. (See AFA Journal 3/12.)
Greg Hasek, marriage and family therapist at Misty Mountain Family Counseling Center, affirms what Steve was discovering. Misty Mountain is a Christian counseling service in Portland, Oregon (www.mistymtn.org; 503-670-7277).
“We have been using music in our work for quite awhile,” Hasek said, “and we have found it is pretty powerful.” He told AFA Journal that the caregiver is usually working overtime in the left brain, source of logic, reason and planning. On the other hand, the emotional side of our being is seated in the right brain.
“Music takes us beyond words,” he said. While lyrics may engage the left brain, music allows us to use the right brain, thus leading us to a balance of left and right brain, reason and emotion – a balance that contributes to long-term mental health.
Thinking long term can be a challenge for Dick and Elizabeth. He admitted, “I get knots in my stomach and sweat on my brow when I allow myself to look too far down the road. But reality tells me that the same God who just tripped the switch to fill my lungs with air has our future well under control. That’s not my feeling speaking, it’s a conscious decision. I don’t ever question the practicality of faith anymore.” 
For Dick Peterson’s first person story, visit here.
____________________
65 million Americans (29%) are caregivers spending an average of 20 hours per week caring for a loved one.
70 million Americans will be age 65 or older by 2030.
34 million American adults (16%) provide care to adults 50+ years of age.
66% of caregivers are women caring for widowed mothers.
51% of care recipients live in their own homes.
30% of family caregivers are themselves age 65 or over.
Source: www.caregiveraction.org; www.shirleyboard.com
____________________
Resources for caregivers
Mama Moves In – Practical advice, helpful products and poignant stories of personal experience mark this comprehensive volume by Thomas A. Dyke. The author’s insights are based on five-and-a-half years of elder care in his home after his mother could no longer live alone.
The book and an accompanying CD with extensive additional resources are available at www.dykepublishing.com, orders@dykepublishing.com, or 512-923-4797. Dyke gave AFA the following tips.
Before Caregiving
1. Learn as much as possible about the demands of elder care – time, emotional, financial (for all family members).
2. Decide who will be the primary caregiver and who will be secondary.
3. Determine who can contribute to the effort – time, money, food, entertainment, emotional support. Define roles and responsibilities in writing – e-mails will do.
4. Investigate what financial and medical support is available from government agencies and charities and how to qualify for help.
During Caregiving
1. Take care of yourself as caregiver – mentally, emotionally, physically and spiritually. If you don’t stay in good shape, the effort can go downhill rapidly.
2. Recognize and admit when to ask for help from those who have committed to help.
3. Be proactive with the care recipient; don’t wait too late to act or the situation may become severe.
4. Don’t forget safety and security from the inside and the outside.
Because You Care by Cecil Murphey and Twila Belk, both long-term caregivers, is to be released this month by Harvest House. The 50-page gift book is packed with wisdom, insights and personal stories that will minister to caregivers and receivers alike.
Belk tells of the time when the doctor told her and her husband Steve that he had a debilitating disease. She writes, “Worse than the disease were the two words I had to face and didn’t want to admit: No recovery. Steve’s condition will grow steadily worse.”
Murphey’s writing ministry includes more than 100 books including 90 Minutes in Heaven (with Don Piper), a New York Times bestseller. He has also served as pastor and hospital chaplain for many years.
Dignity is a new DVD with original music and lyrics, spoken resources, and links to more helps for caregivers. One of the moving and creative songs Steve Siler wrote for this project is titled “We’ve Never Done This Dance Before.” Siler said, “It’s the story of an elderly couple. He is caring for his wife, and they compare what they’re going through together to dance steps they’ve never done before.”
