Dementia

Several dozen residents are in the large living room, some slowly move around on their own, others use walkers to help with their balance, several walk with the aid of a cane. Many sit in large comfortable chairs and some in wheelchairs. A few have a noticeable tremor in their hands, and some are softly talking to themselves or to no one in particular. Many sit quietly with their eyes closed, perhaps sleeping, while a few gaze off without focusing on anything. Some interact with the staff, some do not. At one end of the room there is a bingo game in progress. Some of the players can find the numbers on their cards by themselves, but most need assistance. Along one wall is shelving filled with books, another wall features a large aquarium containing an assortment of brightly colored fish, and in one corner of the room is a flat screen TV tuned to a soap opera. Several ladies are watching it intently.

The people in this room represent a cross section of humanity. The men and women are different races and nationalities, and their ages span six decades. They come from many religious faiths and all types of economic backgrounds. They are of every political persuasion, and there is a wide variety of education levels. They filled their lives with an assortment of careers and jobs, and in the course of the human experience they have known great joy and sorrow. Several of the individuals were born with Down syndrome and other forms of developmental disabilities. Most are spouses, mothers, fathers and grandparents.

But who are they really? What is the story of their lives?

The oldest man in the room is wearing pajamas as he slumps in his wheelchair. Every so often a staff person repositions him so that he is comfortable. In WW II this now frail gentleman was an engineer who bravely stormed Omaha Beach at Normandy. Although seriously wounded he continued to detonate obstructions so that armor could come ashore. He is no less a hero today than he was in 1944.

A woman who raised three sons and two daughters alone after her physically abusive husband died from alcoholism compulsively plays with her hair as she slowly sways to music that only she hears. The painful memories of her difficult life are forever behind her, as her days are now spent receiving the love and attention of her children who do everything possible to make the time she has left worth living.

In the corner there is a woman who faces the wall and no longer interacts with others. Although she came from simple means she worked hard and put herself through medical school. In her role as a physician she frequently helped families cope with devastatingly difficult end of life choices for their loved ones. Her family now faces those same heartbreaking decisions in regard to her life.

Sitting in a leather recliner is an oddly distinguished looking man who desperately wants to converse with whoever comes near him. Early in his life he started his own business that eventually employed hundreds, but although he was a compassionate and generous boss, those that worked for him have forgotten him in his time of need. He has not had a visitor in months.

An African American woman wearing a colorful scarf supports herself with a broad-based cane as she stands and looks at a portrait of Robert Kennedy. She recognizes the face of a man she once admired, but she cannot recall his name. In the 1960’s this mother of two courageously took part in the Civil Rights movement, but she is now once again considered a second class citizen by some because of her diagnosis.

Over by the bookshelves a large muscular man sits and nervously rocks back and forth. He is rarely able to relax and his tension causes him great anxiety. He immigrated to this country four decades ago with little money and no formal education. With nothing more than determination and willpower he spent years working back breaking jobs to seek a better life for the family he no longer recognizes.

One of the women staring intently at the TV is wearing a skirt with a beautiful flower pattern and a matching blouse. Her hair is neatly fixed. Before her diagnosis she enjoyed a long prestigious career as a research scientist. During that time she published several important papers, but she can no longer dress herself in the mornings. However, it is still extremely important to her to look her best.

A man in a red bathrobe stands at the back of the room watching the bingo game. He supports himself with a walker because he has limited use of his right arm and leg. For many years he held state political office, and he vigorously used his power to deny funding to assist his vulnerable constituents as they aged. His voting record led to the financial ruin of countless families who could not afford the care he now receives.

A tiny woman with Down syndrome sits quietly at a desk coloring in a book with markers. She pays no attention to others in the room, but she has animated conversations with imaginary characters that make her smile and laugh. She was employed for over two decades at a sheltered workshop, and although her vocational skills inevitably deteriorated she is still loved by her friends and the staff who miss her greatly.

A man with a full gray beard continuously rolls back and forth in his wheelchair. Because he is uncomfortable making eye contact he rarely looks up from the floor. He was a fighter pilot who spent five years as a prisoner of war in North Vietnam desperately hoping that he had not been forgotten by those at home. But now he is a prisoner of his own memory loss which has caused him to forget his brave service to his country.  

Sitting in the sunlight streaming through a window is a petite woman wearing a large pair of glasses. Despite the painful arthritis in her hands she slowly crumples up a newspaper in her lap. This person was an elementary teacher who spent 35 years introducing children to the joy and adventure of reading, but now she becomes extremely frustrated as she struggles to make sense of printed words.

A grandmother of five sits in her favorite spot next to an ornate end table with a decorative lamp. She is the picture of contentment, and she appears to be at peace with herself and her surroundings. She nods and smiles at each person passing by as she spends her time lovingly chatting with her husband of fifty-eight years, even though he passed away more than a decade ago.

A man sleeps on the end of a couch. His face is weather beaten and his skin is leathery. He was homeless and found wandering in the downtown area two years ago. After several weeks it was discovered that he was actually quite wealthy having made his money in the stock market, but mental illness had taken its toll. He has no memory of his previous life and after having been severely beaten while living on the streets he now cowers in fear when someone approaches.

Studying a large bulletin board, a man with tears in his eyes struggles to say out loud the words he sees describing upcoming activities at the facility, but he is not successful. This individual was a loving father who devoted his life to his son who has autism and is nonverbal, but now they share that characteristic because he can longer speak himself. Tomorrow he will try again with the same result.

Because he is physically intimidating, the largest man in the room is carefully avoided by the others. 30 years ago he graduated from a renowned university which he attended on an athletic scholarship. Unfortunately he suffered multiple concussions during his four year football career which has left him with significant mental deterioration that now causes him to lash out with aggressive behavior at the staff.

Sitting at a table with two other people is a woman who continually uses her left hand to try and stop the pronounced trembling of her right hand. It is a repetitive action that she is unaware of. This person was an entrepreneur who gained wide attention as a chef which allowed her to open her own restaurant to great critical acclaim. Her uncontrolled trembling now requires others to cut up her food at mealtime.

Looking intently at the large aquarium is a short balding man who was forced to retire as a pastor when his growing confusion made it difficult to interact with his congregation. At first his family refused to accept his diagnosis, but now they are resigned to it. This gentle and kind man spent his adult life ministering to others and praying for healing for those who were in need, but now he is the person that others pray for.

A man continuously taps his fingers on a small plastic tray. The compulsive behavior seems to offer him a form of comfort from the frustration he feels at needing assistance to perform even the most routine tasks. This individual was a uniformed police officer risking his life daily to protect the public, but now he requires constant protection from everyday dangers such as stoves, bath water and stairs.

In the very middle of the room is a woman in her late forties sitting quietly in her electric wheelchair. She was born with a developmental disability and cerebral palsy. At the urging of doctors, her parents reluctantly placed her in an institution. She spent forty-five years living there until she was finally moved to a group home only to have the onset of dementia rob her of the independence she had always dreamed of.

Sitting near the door is a woman who positions herself each day so she can see down the corridor and catch the first glimpse of a special person. She was a loving wife and homemaker for more than five decades who is visited every day of the year by her devoted husband who still cherishes her. Although she can no longer recall his name she feels compelled to hold his hand tightly during each visit.

Moving slowly around the room in her housecoat and slippers is a woman who never married and has no family. But through the kindness of strangers she has been adopted by a class at a local elementary school who makes sure that she receives cards, letters, handmade gifts and frequent visits to let her know that someone cares. The children who provide this attention benefit as much from their efforts as she does.

Every man and woman in this room has a personal story. They are not just a diagnosis locked away for their own protection. They are human beings with a past but also a present. For the most part these individuals were just like you and me. They are loved ones, friends, coworkers and neighbors. They are the type of people we interact with every day of our lives. For many of us this will also become our fate. We will either be residents in a facility like this one or we will be visiting someone we care about who lives there. And although it is important to understand who these people were before the onset of their disease, it is a terrible mistake to think of them only in the past tense. Their lives matter just as much now, at this moment, as they did before their cognitive impairment began. What they did or did not accomplish previously in life has absolutely no bearing on the fact that they deserve to be accepted for who they are today.

Because the cruelty of dementia can be crushing, we must provide the most comprehensive care and support possible for those who are living with it, as well as their families. The individuals who spend their days in facilities like this one are among the most vulnerable people in our society, and how we treat them defines us. Our response to their needs is a reflection of what kind of human beings we really are. When someone reaches the stage where they require 24 hour care and supervision we must have the moral integrity to provide it, and we must have the compassion to make that level of care available to whoever needs it. To do otherwise is unacceptable. We must embrace our responsibility to make every person’s life with dementia as meaningful and comfortable as possible and we must ensure that they are treated with the same dignity and respect that they received before their diagnosis. They deserve no less.

Dementia proves that the purest form of unconditional love is when it is given to someone who can no longer return it.