Finding Grace in the Face of Dementia (eBook)

Introduction

Dementia, dignity, and honoring God—you must be kidding! Chances are you have never seen those three thoughts in the same sentence. How can such a tragedy as dementia be dignified, and how in the world can God be honored through it?

As followers of Jesus, we should desire God to be honored in all things, so that includes our approach to the tragedies of life, even dementia. A number of years ago, when I started questioning these issues, I was talking to a friend about a paper I wanted to write on how dementia can bring honor to God. I recall telling my friend that I did not know what I was going to say but that it was going to be very short. Well, the more I got into it, the more I realized there are many ways in which God can graciously use the tragedy of dementia to honor himself. That short paper has become this book.

Over and over again I have seen God honored when others respect the inherent dignity of those afflicted with dementia. It happens because the dignity of everyone, including those with dementia, is rooted in nothing less than the fact that they were made in the image of God. Dementia is common today and will become increasingly so in the future. If we are to live faithful to our Lord, Jesus Christ, we need to learn how we can respect the dignity of those who suffer from it and in the process honor God.

At the outset we must have a common understanding of dignity, since the term has a wide variety of meanings. Some define dignity as something intrinsic to being a person. Others think of it as an individual’s reputation, while some look at it as people’s ability to respect themselves and be in control of their lives. When used in connection with the end of life, many use the word dignity to refer to freedom from pain and dependence. None of these are what I have in mind. Scripture teaches that all human beings are made in the image of God, which makes them distinct from the rest of God’s creation. Humans are loved by God to the extent that his Son died to allow those who believe in him to enjoy his presence forever. These two facts impart a dignity rooted not in who they are or in what they can accomplish but only in God himself. It is true of all persons, including those with the most severe dementia. Now, in addition to a God-given dignity common to all, there may be other sources of dignity that vary from person to person. Some may be more dignified in their character, and others acquire dignity through their accomplishments, but these sources of dignity are added to their inherent, God-given dignity.

As you read, you will notice that I never refer to those afflicted with dementia as “the demented.” No! I always refer to them as “people with dementia.” I never want to think of dementia as something that defines who they are. They are first and foremost people even though afflicted with the dreaded disease called “dementia.”

The Good, the Bad, and the Ugly

Dementia can be experienced in a wide variety of ways. Just to illustrate, I’ll share with you three stories from my direct experience. You will see that they represent the good, the bad, and the ugly.

Jessie illustrates the good. At eighty-six, she was still the life of the party. After spending decades on the mission field, she developed dementia, became progressively confused, and was no longer able to live at home with her husband. When I visited her in the nursing home, she was invariably sitting with a group of friends animatedly telling stories of her life in Congo. She would get to the punch line, slap her thigh, and laugh contagiously. Her friends, gathered around her, had a great time. Now, did it really matter that Jessie told the same three stories over and over? It didn’t to her friends! They enjoyed them at the moment, even though they did not remember them. She was happy, she had a meaningful role in the lives of others, and she enjoyed talking about her Lord and the work she had seen him do. Unfortunately Jessie’s story is not typical, nor is it even common, but it does show a “good” side to dementia.

The bad is seen in the experience of my mother. Mom was one of the kindest, most loving women I have ever known. She was widowed at eighty and continued to live independently in a senior-adult facility for many years. People regularly invited her to eat with them, as they loved her sweet spirit and happy demeanor. She had a real ministry to the dying and, in rotation with some other residents, would go sit with those who were dying in the nursing wing of the community and softly sing to them her favorite hymns. Slowly, however, she began to lose some of her abilities. She caused several small fires by forgetting to turn off the stove; and she would occasionally lose her way when returning to her apartment. The administration told us, her children, that it was time for her to move into the dementia section of the facility. After praying together, we met with her to discuss making a change. Though we had expected her to resist, we were thrilled when she graciously consented to the move. Over her year there, she became increasingly forgetful, confused, and at times agitated. One time she struck another resident, which was totally out of character for Mom. She was then moved to the nursing wing, where she became increasingly boisterous and at times combative. She was generally nice to us, but clearly her personality had changed. Eventually, she did not recognize us as her children, yet it seemed she knew we loved her. I feel sorry that I had to place Mom’s story into the “bad” category, but she is far from unique, as most patients with dementia fall into this category at some point.

When I think of the “ugly,” my mind goes to James. He had been the executive of his family. Raised by a domineering father, he tragically followed that example well. Married fifty years, James and his wife had three daughters. They were his pride and joy, while they, in turn, loved him dearly. But James was in charge, and he left no question about that. In his mid-seventies he became increasingly forgetful and confused. He was unable to recognize that he was failing and still insisted on being the boss. He would wake up at 3:00 a.m. and insist that his disabled wife cook him his breakfast. Not being able to do so, she would call their daughter who lived nearby. She responded dutifully and cooked his eggs to his precise order, but then he’d go into a rage because he thought he had ordered her to make French toast. She was broken to tears. Such things began happening all too frequently until eventually the family, in desperation, had to make arrangements for James at a dementia-care facility. James’s case was “ugly” and, though somewhat less common, not rare.

Yes, dementia comes in all shapes and sizes. But what actually do we mean by dementia? At its simplest, dementia is a compound word. The prefix de- signifies “removal of,” and ment comes from the same root as mental, so literally dementia means “less brain.” The term dementia is falling out of vogue. Now it is more correct to refer to major neurocognitive impairment. Since that is a mouthful and not widely understood, I will continue to use the word dementia.

There is often confusion between dementia and Alzheimer’s disease. Dementia is a larger category of which about 70 percent is Alzheimer’s. In this book I will usually speak of dementia rather than restricting my comments to Alzheimer’s. There are a number of other kinds of dementia, as well, as you will see in later chapters. I also comment that though this book focuses on the dementias typically associated with the later years of life, the principles I share are relevant to those with cognitive impairment at any stage of life, including those in their younger years who have intellectual development disorders (formerly termed “mental retardation”) and those who have suffered brain injury.

The Challenges of Dementia

Our older years can have many challenges. “Old age is not for cowards,” as one of my dementia patients told me at every appointment. Each time she said it, she laughed, thinking it was the first time she’d ever said it. The apostle Paul expressed it differently: “Through many tribulations we must enter the kingdom of God” (Acts 14:22). I often speak of the “four Ds” of our later years: depression, disease, dementia, and death. Any one of these can be difficult, but, for many, dementia is the greatest challenge. It can be a massive tragedy not only for the patient but, perhaps even more, for those who love and care for them. Dementia can progress over as many as twenty years before it finally leads to death, and even then it can leave horrible memories for the survivors. It is further tragic, as we will see, for while there are many ways to improve the quality of the life of those with dementia, there are currently no cures.

It bothers me how many people fear getting dementia, even more than they fear cancer or death. This fear comes from at least two reasons. First, many have had bad experiences with dementia sufferers, and they don’t want to succumb themselves. Second, and on a more fundamental level, dementia is...