THE LONG GOODBYE

Jim can feel his heart beating fast. He is sitting in his car, hands on the steering wheel shaking. He looks up at the traffic light, red light. He can feel the sweat trickle down from his brow, down to his left cheek. He quickly brushes it away. He looks around him. Cars everywhere. His breath becomes shallow and ragged. The buildings and the scenery seem like he has been here before. They look familiar but somehow, at the same time, they don't. 

A loud honk from the vehicle behind him caused him to jump in his seat. Jim is terrified now. The light has turned green. But Jim remained frozen in place. He doesn't know what to do. His eyes widened in bewilderment. The honking kept on, and  he can hear the muffled shouts of the drivers around him from his closed window. His heart is racing faster. He glanced at his rearview mirror and see the flashing lights of a police car. He watched from his driver side mirror as the officer stepped off of the vehicle and walk towards his door. The officer signaled for him to roll his window down. 

"Are you okay, sir?"

"I... I don't know...", replied Jim between sobs. "I don't know where I am. Where's Nancy? I don't know where I am".  He buried his face on his hands and wept.

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Jim first met Nancy in science class. She was new in town and quite shy. To Jim, she looked very plain looking, with her dark brown hair and wide brown eyes. She was not someone he would ask for dates. You see, Jim was the school's basketball star. He won MVP as a sophomore when the school won the state championships last year. He was quite popular with the ladies, dirty blonde hair, green eyes, and small dimples on each cheek. Nancy sat a couple of chairs to the front and to the left. She was plain-looking alright, but there was something about her that intrigues him. He doesn't know what it is but there was something there. Maybe it's the small lady bug hairclip she wore on her hair. 

He started casually talking to her between classes and found her quite charming. She had an infectious smile and a cute little laugh. However, Jim has to keep up with appearances. Everybody knows that the prettiest girl in class, Tina, was interested in him. And his friends have been pushing him to date her. His friends don't think to much of Nancy. To them, she is but a wallflower in class, totally unremarkable. So her kept his friendship with her low key. 

Prom came and was surprised to find himself thinking of Nancy. Thinking of Nancy in her nice bright colored dresses, her lady bug hairclip, her shy smile. He asked Nancy to go with him. She hesitated at first, but said yes at the end. He felt giddy with excitement. Two days later, while he was out walking with friends on campus, Tina walked up to him and asked him straightforwardly, "So, Jim, when are you going to ask me to the prom?".  Jim froze. His friends were already hollering  and giving each other high fives. They were expecting that Jim and Tina would make King and Queen, they were such a beautiful pair. Jim felt that he could not turn Tina down in front of his friends. So he asked her to go with him. He felt torn deep inside. He doesn't have the heart to tell Nancy. And he'd be embarrassed to reject the prettiest girl in class in front of his friends. 

On the day of prom, he simply didn't show up at Nancy's house to pick her up. He stood her up without explanation. He and Tina walked in much to the admiration of the crowd. On his arm is the most popular girl in school, they were like a Hollywood power couple, and yet he did not feel happy. Sometime later, he saw Nancy dancing and laughing on the dance floor with her best friend Beth and her date John. Nancy looked so happy, so full of life, without him and in spite of him ditching her on prom night. 

It was a that moment that he knew in his heart, he had to win her back. He must win her back. Nancy is such an extraordinary woman. 

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Alzheimer's disease is the most prevalent form of dementia in the United States accounting for 60-80% of all documented dementia cases. It is a progressive brain disease that results in the loss of brain neurons resulting to a decline in mental capacity and performance, loss of memory, and a reduction of behavior and social skills that eventually leads to a person losing functional independence. As many as 6 million Americans are affected by this disease and this number is expected to triple in the next 4 decades. It is the 6th leading cause of deaths annually in the United States and is the only one, arguably, that cannot be slowed, prevented, or stopped. The total cost of dementia care in the United States in 2018 was at $290B, excluding unpaid care. It is expected to climb to $1.1T in the next 30 years. Given the rapidly aging population of Western countries including the US, the social and economic costs of dementia continues to steepen as the years go by. 

Dementia by itself is an umbrella term for conditions that result in a progressive decline in mental function and memory. There are dozens of types of dementia with Alzheimer's being the most prevalent and most known. The disease progresses thru 7 stages. The first two stages feature symptoms that are almost undetectable. Personality changes start in the 3rd and 4th stages where family members start to notice symptoms and work becomes interrupted. Note that the patient may expire without completing the stages but as the disease progresses, cognition and mental function worsen until the affected individual becomes fully incapacitated. Dementia is often touted as the Disease of a Long Goodbye because families lose their loved ones slowly and it is painful to see their heroes fade, eventually not remembering who they are. 

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Nancy found Jim obnoxious but quite attractive at the same time. He was the school jock that all the other girls swooned over. It came as a shock when he started to talking to her. Being new in town, with few friends, it was comforting to talk to Jim. She eventually found him quite charming, awkward, and despite being popular, he was down to earth. She found herself thinking about him quite often, and soon enough his name found its way to her diary. 

Her heart leapt to her throat when Jim asked her to the prom. She felt something off. This was something she wanted all along but somehow, at the back of her mind, something didn't feel right. When Jim saw her hesitate, he wavered and said nervously, "You don't have to say yes if you don't want to. It's okay." She paused, and finally, she said yes. 

The days leading to the prom went by like a whirl. The nagging feeling at the back of her head never left. She felt that something might happen at prom, that it might not be as nice and as magical as she thought it would be. Will Jim break her heart? 

She found a light yellow dress with frills. She put a ribbon in her hair and wore her laced up Sunday shoes. She sprayed light fruity cologne on her self. Her parents told her she was glowing. She sat on the sofa, nervousness and excitement trying to win over each other, and waited for Jim.

He never came. She was in Mama's embrace when the phone rang. Beth, her best friend, called her from the school. Beth and her date, John, didn't see her at the school gym where the prom is being held. Between sobs, she told Beth that Jim stood her up. Beth told her to wait there and hung up. Fifteen minutes later, the doorbell rang. Beth and John were outside. Before she can say another word, Beth pulled her upstairs to the bedroom, fixed her make up, and told her "To hell with Jim! We are gonna go out there and we are gonna have a good time!". 

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It was the perfect May wedding one could wish for. The blue skies were littered by light feathery clouds, and spring bird songs filled the air. Beth, her maid of honor, squeezed her hand and giggled. John, her husband, stood to the side taking pictures. Jim was standing beside her, looking as dashing as ever did. They dated for three years, engaged for one more before they decided on a wedding date. As the saying goes, her cup runneth over with love. It was the happiest day of her life.

They built a home and a family. Two girls, two boys. Time flew fast and soon the kids, one by one, started leaving the nest. Jim had the same beautiful green eyes, the same disarming smile. He now had a soft belly, and where once were sinewy arms, now hold some flabby wrinkled skin. But, my gosh, he still sweeps her off her feet. 

She saw the first sign two weeks after they spent a holiday in Mexico for their 42nd wedding anniversary. She received a notice of disconnection from the electric company. She thought it was very odd. Jim always pays the bills on time. All this time that they have been married, he has never missed a single payment. She called the electric company, ready to give them an earful. They told her that their account has not been paid in the past two months. When she finally hung up, she had more questions than she had answers. She found Jim sweeping the garage floor. She asked him about the electric bill. He casually replied, "Oh, I must have forgotten. Can you please just sign a check for me, dear?". 

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The incident at the traffic light was the last straw. This time, the whole family gathered together to plan out what to do with Dad. It was clear that Dad was no longer safe to drive. He has gotten more irritable lately, and snaps every time the subject about driving is brought up. He insists that he is fine and that he is a "grown man who knows what he is doing". 

In moments of clarity, he sounds and acts just like how he's always been. But there have been brief moments of outbursts, confusion, sometimes downright hostility. The incidences have become more frequent as days went by. The children seldom see this, granted, they don't live in the same roof as Jim and Nancy. Jim hasn't been sleeping well lately and has been napping at different random intervals throughout the day. He has been asking the same questions over and over again. When Nancy tells him that he has asked that question just a few minutes ago, Jim sulks and insists that he hasn't. He also has seemed more withdrawn and has shown no interest in what he used to love doing before. He hasn't tinkered with his projects in the garage, or worked on his garden, or read his books.

To Nancy's eyes, Jim is fading. She feels a myriad of emotions, generally negative, but mostly it is just hopelessness. And isolation. When Jim's doctor finally sent him to a neurologist who did a battery of tests on him, Nancy dreaded the findings. Please don't let it be what I think it is, she prayed. But her prayer wasn't realized, Alzheimer's, they said, advanced Alzheimer's disease. The shock ripped Nancy's heart out. Jim quickly stood up from his chair and pointed at the doctor furiously: "You're lying!" The rage in Jim's eyes was something that she has never seen before. And that's when she knew that the doctor was right.

Jim's mood became unpredictable and he eventually started lashing out at other people, defensively trying to cover the fact that his mental faculties were deteriorating. They soon had to quit going to church. Church friends promised to come and visit, and they did, for a time. And then the visits became more sparse as time went on. Soon, people just stopped inviting them to parties, events, social gatherings. People assumed that they were unavailable anyway. In light of all of these, never had Nancy ever felt so lonely, desperate, and alone.

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There are a lot of medical articles that delve on the subject of Alzheimer's disease and dementia but the topic of focus is the disease itself and the afflicted, and very rarely is the impact on familial caregivers. Caregiver burnout is prevalent in Alzheimer's patients just like it is in many progressive, incurable diseases like ALS, and Parkinson's disease. Caregiver burnout is characterized by three dimensions: emotional exhaustion, cynicism, and reduced personal accomplishment. A Japanese study revealed that dementia symptoms that most commonly result to caregiver burnout are aggression, irritability, abnormal motor behavior, and hallucinations. 

The emotional banks of caregivers of Alzheimer's victims can get exhausted steadily. The routine is mind numbing, the emotional toll grinds towards hopelessness, and the isolation is draining. The schedule, the doctor appointments, the medications, the mundane day to day tasks-- they all are physically and mentally taxing. Throughout all of these, society tends to just forget about the caregivers: out of sight, out of mind. Dementia patients and their caregivers become unintentional social pariahs, relegated to an endless spiral of despair that can only be severed by inevitable death. 

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Today is a good day. Jim has been lucid. He took his medicine today without fighting with Nancy and allowed her to help him wash up in the shower. He asked her about the grandchildren and wondered aloud where the photo albums were placed. Nancy got them for him and they sat in the sofa flipping thru the pages of the picture book, rekindling memories, talking about family, reminiscing happier times. Many times Jim would ask about who the people were in the picture, and Nancy obliged him, ever so patient with explaining who they were and what event it was in the picture. 

In moments like this, Nancy feels that Jim has returned to her. The fleeting moments of lucidity, full of promise and love. The only man she had ever loved all her life is holding her hand again, his kind eyes knowing her again -- a recognition that this person is valuable, precious, endearing. 

Jim gently closed the picture book and yawned. He placed his head on her chest, and soon Nancy can feel his gentle purr of a snore. The soft rise and fall of her chest as she breathes soothes the husband as it did the children when they were very small. Jim's right hand was softly clasping something. She pulled his fingers carefully to see what it was.

And from his hand fell a small ladybug hairclip. 

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