People often say to me, “Tracey, you don’t seem like you have dementia.” I bet some of you are thinking that right now. If you had seen me last Friday night, you would think differently.
We had gone to a neighborhood pub for dinner and live music with a friend. It was loud and chaotic. Soon after the music started, I felt a sudden and desperate urge to leave and go home. I whispered in Emily’s ear that I was going to walk home. Concerned, she started to call an Uber. I protested that it was unnecessary.
Without giving her a chance to stop me, I got up and left. Wearing flip flops, I started my 1.5-mile walk home in the dark. I tried to cross a complicated intersection and got a little confused. Some nearby folks on bikes yelled out, “Hi Tracey. Where are you going?” I responded, “Home.” They asked where Emily was, and I said, “At the restaurant.” They offered to walk with me, but I said that it wasn’t necessary.
They insisted and led me to a safer place to cross the busy street — a crosswalk, of all things. Then they walked with me for several blocks until they were sure that I wasn’t lost. I continued on my way in the dark. When I got home, I texted Emily and crawled in bed. I felt safe but exhausted. I was fast asleep when Emily returned. It had been a hard night.
Many of us (probably most of us) are really uncomfortable with the word “dementia.” In fact, we prefer to use words like: thinking problems, memory challenges, or mild cognitive impairment.
Why is the word “dementia” so loaded, and why do I choose to use it? We think of a person with dementia only in the advanced stage: almost entirely lost and bewildered, confused, limited, or incapacitated. That’s not me or others, especially middle aged adults, in the mild to moderate stages of brain disease.
I choose to use the word “dementia,” because if we are going to address this growing health crisis in a just and compassionate way — if we’re going to find causes and cures, and provide loving care, support and community for those living with dementia and our families — we have to name the elephant in the room. We have to de-stigmatize the word “dementia” and talk about it.
Denial is a common issue when it comes to dementia. People want to offer comfort by saying things like, “You don’t seem different to me. Are you sure you weren’t misdiagnosed? We all forget where we placed our phone or can’t recall a word or name.” But such well-intended remarks are neither comforting nor helpful, for they reinforce an unhealthy cycle of denial and doubt.
And as dementia runs its course, it becomes increasingly difficult to care for oneself, to act appropriately and to speak coherently. As our brain disease advances, we often end up in wheelchairs, and eventually in bed. At the end-stage, we are frequently unable to meet our basic needs, thus becoming very reliant on the kindness of others, even strangers.
Some might say, we become like Lazarus, begging for crumbs of time and attention, respect and compassion, care and concern, and perhaps, most importantly, friendship and companionship.
The parable of the Rich Man and Lazarus is based on an ancient Egyptian folktale about the reversal of fortune in the afterlife. Alexandrian Jews—perhaps including Jesus’ family, who spent a few years living as refugees in Egypt—brought this story to Palestine, where it became widely known as the tale of the poor scholar and rich tax collector.
In Jesus’ telling of the story, the Rich Man (often called by his Latin nickname Dives) was a member of the privileged class. He lived a life of leisure, wearing expensive linen, eating rich food and drinking fine wine.
Lazarus, the poor man, whose name in Hebrew means “God helps,” is the only character in all of Jesus’ parables with an actual name. He was a beggar with a bad skin disease that alienated him from society. Lazarus was so hungry that he ate whatever those who sat at the rich man’s table threw on the ground; to add insult to injury, the dogs competed for his crumbs and licked his oozing wounds.
According to first-century worldview, Lazarus got what he deserved. His miserable condition resulted from his sinfulness (or that of his parents), his predestined lot in life, his behavior, or some combination thereof.
Unfortunately, many Americans still think the same way about the poor, the homeless, the addicted, the undocumented, the blind, the lame, the chronically sick, the mentally ill, and even folks like me who are living with dementia. Bad things happen to good people, but we have a tendency to blame the victim or to view their condition with an element of shame, blame, and disdain. And all too often, we mistakenly blame and sometimes disdain, ourselves for our own condition or situation in life.
This parable may well be Luke’s take on the well-known passage in Matthew 25*:
When the Lord comes in glory, he will sit on a throne and separate the people.To those on one side, the Lord will say: “Come, you who are blessed by my God; inherit the kingdom prepared for you before the world began.
I was trying to order in a restaurant but was confused by the menu, and you explained it to me. I wanted a bottle of water from the vending machine but could not figure out how it worked, and you got it for me. I didn’t recognize your face, and you reintroduced yourself to me without making a big deal of it. I became overwhelmed trying to cross a busy intersection, and you offered your arm. I couldn’t understand how to operate the subway ticket machine, and you offered help. I needed a quiet place to swim, and you made it possible. I got confused in an exercise class, and you gently assisted me. I was scared in a TSA line, and you spoke to me slowly. I was lonely, and you came to my house and played music and games with me.
Then the righteous will reply: “When did we see you in such distress and respond with such compassion?” The Lord will answer, “Whatever you did for one of the least of these my people, you did for me.”
To those on the other side, the Lord will say: “Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels.
For I stood at the deli line unable to make a decision, and you grew impatient with me. I tried to wash my hands in a public restroom and couldn’t understand the automatic faucet, and you pushed me out of the way. I attempted to buy a movie ticket, and you rushed me. I needed to sit down on the bus, and you wouldn’t give up your seat. I felt self-conscious as I stuttered and shouted to make myself understood, and you laughed at me. I hesitated at a traffic circle, and you tried to run me down. I had a melt-down in public, and you berated me. I was lonely and distressed, and you refused to visit me.
They also will ask: “When did we see you in such a state of distress and fail to respond with compassion?” The Lord will reply, “Whatever you did not do for one of the least of these, you did not do for me." Then they will go away to eternal punishment, but the righteous will go to eternal life.
Friends, we do have a growing crisis of dementia in our midst and a growing opportunity for compassion. We need our churches to be visible communities of acceptance, belonging, and concern where people living with dementia and their families can find a home of welcome and embrace.
When people with dementia and our spouses can no longer attend church, the congregation can come to us. When people with dementia can no longer remember who we are, others become our memory, not only reminding us of who you are but, if necessary, reminding us of who we are. When spouses and care partners are exhausted, friends, neighbors, and parishioners can offer support and respite.
When people with dementia find ourselves in assisted living facilities, friends, families, congregants and clergy need to visit, and caregivers must resist the temptation to infantilize us. When we are at the end of our lives, the church can advocate for our right to die with dignity and be present with us and our families.
And when we die, the church can embrace our grieving loved ones, the survivors of a long battle with an unrelenting enemy. The story of Dives in Hell and Lazarus in Heaven can be a mirror to examine your own life, attitudes and values. Don’t just ignore or pass by your Lazarus—whomever he or she may be.
Look into her eyes. Offer him a glass of water. Believe people when they share their truth. And extend your arm to be a safe passage for someone at the busy intersections of life.
*The paraphrase of Matthew 25 used here was inspired by a similar adaptation on www.bestforages.co.uk