Dealing with Denial When a Champ Refuses to Admit He's Down for the Count
By Paula S. McCarron
Lonnie Ali says she never knew what she would be in for when she married Muhammad Ali in 1986, even though she was aware of his diagnosis of Parkinson's disease.
But more than 20 years later, she sums it up this way: "I don't think I was ever in denial per se. I just thought: What comes, comes. And when it does, I'll deal with it."
With Ali's recognition as the most well-known athlete on the globe during his day, Lonnie Ali was busy then, just as she remains today--but today she's the spousal caregiver for "The Greatest." What she lacked in terms of knowledge about caregiving or even grasping the riddle of Parkinson's disease then, she speaks volumes about today.
And what Lonnie will say she did not anticipate was the extent to which her famous husband was in denial about his illness. To illustrate her point, she says, "He'd actually ask me: Do you think people know I have Parkinson's? And I'd say: Yes, I do. After all, it's all over the news and in the papers and all the magazines. He knew he had Parkinson's but he did not want to let it affect his life."
Ali's response was like that of many who experience a serious change in health or realize their physical or cognitive impairment has become more pronounced. A serious diagnosis or change in functional ability creates fear that not only will alter their own lives, but their relationships and the way in which they are perceived by a spouse, family members, friends, or coworkers. And for Ali, it all may have been magnified by his worldwide notoriety and great physical skill that gained him so much attention, including his receiving the highest civil award possible in the United States, the Presidential Medal of Freedom in 2005.
While Ali maintained a strong denial of his condition, Lonnie says she was becoming increasingly all too award of the progressive nature of Parkinson's disease. While the cause of Parkinson's is not fully known, the troubling and debilitating symptoms of the disease include tremors in the limbs, a stiffness or rigidity in movement, poor balance, and slowness of movement. As the disease progresses, the ability to walk, talk, and swallow become increasingly problematic. Although the disease is not curable, symptoms can be managed with treatment and medication.
Ali's body showed signs that symptoms were progressing, but still he maintained a staunch denial. He would admit to having problems with twitching, speech and gait but refused to take medications. "I'd find pills all over the house, even hidden in flower pots," recalls Lonnie. "I felt I was failing. After all, you can't treat or assist someone who won't admit there is an issue. I was afraid the disease would overcome him.
Eventually Ali's denial crumbled as his symptoms grew more severe. With wry wisdom, Lonnie says her husband's use of denial as a way to cope with his diagnosis should have come as no surprise. "After all, he didn't get to be who he is by listening to what other people said."
For caregivers, whose loved ones are refusing to cooperate or accept treatment, Lonnie Ali suggests asking this question: Why wouldn't you want to get the best care possible to have the highest quality of life and an active lifestyle?
Asking that one question may lead to surprising answers. In her situation, Lonnie learned that a large part of her husband's resistance to taking medications was due to the fact that the drugs acted harshly on his system and that pills were hard to swallow. "So that forced me to look outside the normal realm of solutions until we found something better," says Lonnie.
Ali also disliked the idea of using his home gym but was receptive to going to physical therapy because he would ride the stationary bike and race with others while at the same time challenging himself.
But there's another side to the denial coin: it's not only care recipients who struggle with denial; caregivers can also resist coming to terms with the decline of an aging parent or illness of a loved one.
Caregiver denial can present itself in a variety of ways. One can refuse to acknowledge the physical and cognitive changes taking place in a loved one; show anger at a loved one for not trying "hard enough;" continually "doctor shop" in hopes of finding a cure; or even refuse to accept caregiving responsibility or seek to accept help.
Victor Molinari, a professor with the University of South Florida's Department of Aging and Mental Heatlh, offers this example: "A domineering person with dementia may still want to be in control of the finances or drive the car, but a dependent spouse may have a difficult time setting boundaries and assuming these new responsibilities."
What can be done in a situation like this? Molinari suggests it is sometimes helpful if an authority figure, like a family physician or a less involved but trusted family member, can be called upon to help intervene.
In the Champ's case, Lonnie Ali says family friends, doctors and advisors did attmept to help her husband come to terms with his illness. Although they were not fully successful in their attempts, their efforts were a help to Lonnie. "They were supportive of me trying to get Muhammad to participate in his care," she recalls.
"To deny is to refuse to acknowledge, accept or believe. Many seniors--and their boomer children, too--feel that to acknowledge or accept aging is to give in to it. I say just the opposite, to not acknowledge aging is to give into it," says Esther Koch, a gerontologist in San Mateo, California. "It takes courage to get beyond denial. One approach is to position it as self-preservation. The question becomes: If not now, when?"
And from the American Heart Association website (www.aha.org) comes this advice: As a caregiver, you have to be realistic about what can and can't be controlled. You can't control the fact that your loved one has a chronic or progressive disease or the impact of that disease. But you can control how you respond to the situation. Remember that you and your loved one are two individuals, on two separate journeys. You may walk with them and support them, but you cannot live their journey for them.
When asked how she managed to get through this difficult time of their marriage, Lonnie answers without hesitation, "Patience and faith. If anything teaches you patience, then caregiving does. You have to keep trying to find new ways so the person with the illness takes a participatory role in their own care, and that involves identifying what obstacles are keeping that from happening."
It all adds up to this, as Lonnie Ali succinctly says: "The sooner you can get the person with the illness to participate in his or her own care, the better off you both are. The stress on the caregiver is reduced and the quality of life for the care recipient is improved."
Copyright 2008 Pederson Publishing Inc.
This article is provided, with permission by Pederson Publishing, a nationally recognized publisher of newsletters and a website dedicated to helping meet the information, resouce and support needs of family caregivers to the elderly. For information on subscribing to the monthly Caregiver's Home Companion newsletter, phone 1-877-259-1977 or visit http://www.caregivershome.com/.