You used to see him quite often at the social club events. He’d usually sit at the end of the table, listening to the conversation but rarely making a comment, he looked tired and there was always an aura of sadness about him. You glance his way and wonder why he’s always by himself just watching the fun and hearing the laughter as the other people socialize the night away. At some point in the evening, he gets up and quietly slips out the door and back to his empty home.
No one takes notice of him because, maybe, he seemed just a bit creepy. He continued to show up until, one day, he disappeared forever. Unnoticed by most, a few of the people may ask what became of him.
No one knows. Few cared.
You needed to hear his story. If only he would have spoken of it but he wouldn’t.
Eight years ago, when his wife developed Early Onset Alzheimer’s disease, his life changed forever. Little by little, he took over the daily chores she used to do. Cleaning, paying bills, laundry, cooking. He had made the decision that home care would be best because he couldn’t bear the thought of sending his bride away. He also couldn’t afford the high costs of assisted living. He tried in home help but, after the agency sent three different people in four months, she was getting upset at the strange new faces.
So, he did it all by himself.
After bills were paid and the housework done, he would sit and read to her. She always asked him to read one article over and over about Alaska from an increasingly dog eared National Geographic. She had always wanted to go there but, they never had the extra money. He reads to her every evening until she falls asleep. She never grew tired of hearing about her beloved Alaska, a magnificent place burned indelibly into her fading memories.
As time went on, she became more difficult. In the early evening when it started to get dark, she would get agitated and very confused. She would ask him to turn on the outdoors light because she couldn’t see her car in the driveway. She demanded the keys even though she hadn’t been driving for five years and her car had been sold.
Reading the Alaska story helped calm her down and, although tired of reading the same article over and over, doing so brought a little peace to his life.
His nights were often interrupted by her restlessness and wandering. One night, after discovering she had left the bed, he found her in the back yard sitting on the garden bench, stark naked and singing a lullaby.
The next day, as if nothing had happened, he did the same ritual of helping brush her teeth, and getting her dressed. On “good days” If they went out, he would brush her hair, make her sit still while he tried to put on some makeup but after numerous failed attempts, he gave up on that.
Eventually she became incontinent and needed help in the bathroom. He took care of it and led her into the shower and cleaned her up, something he had to do several times a day.
Even after she started to forget who he was, he would continue to read about Alaska every night and, on occasion, show her pictures of people she didn’t know. He called them her children and grand kids.
One day, she started to have difficulty swallowing and after a few weeks inhaled food into her lungs that caused an infection.
“Aspiration pneumonia”, the people at the emergency room called it.
The infection grew worse and the nice people from hospice came and took her to their facility. They were very kind and allowed him to be by her side, which he never left for the next five days. She grew worse and could not eat.
He Continued to read her Alaska story which seemed to brighten her steadily dimming eyes.
Her breathing became shallow and would suddenly stop for what seemed an eternity.
Sensing the end was near, he gathered her frail body in his arms, and whispered in her ear. “Good bye my love” as she strained to take her last breath.
Dementia caregiving, for anyone, is an extremely difficult task. Even from the very start of symptoms and the earliest stages of the disease, the grinding heartbreak and severe depression of seeing a spouse slowly fail is beyond comprehension.
For a man, it’s much worse. They are among the loneliest people on the planet. Women often have a support group of friends who, due to their natural ability for nurturing, can sometimes help provide the emotional support they need. Most men have very little if any. Their buddies stay away and, if they do stop by, the sports and testosterone charged conversation offers no solace.
So, if you remember this loving, gentle guy, who some considered creepy, try to find him. Seek him out because he just might be the finest man you’ve ever met.
You might try the cemetery where, with a broken heart, he sits, every day for an hour, and reads aloud from that old dog eared magazine,
…trying to bring a little peace into his life.
Bruce Michael Williams is a semi retired Engineer and care giver for his wife with Early Onset Alzheimer’s Disease. Even before she was diagnosed, he started writing about his observations and the changes that were taking place in her brain. One piece was published in a Chicken Soup for the Soul book, Living with Alzheimer’s and other Dememtias. Now, almost seven years into our journey, he continues to write about her struggle with this debilitating disease.