Pa Pa’s sun-burnt, smiling face disguises well the loss he is already experiencing; only his voice betrays him, “Joan who is playing today?” Pa Pa asks over and over again. Mom repeatedly answers in a voice that becomes noticeably less patient as her own fears become secretly more intense. In less than a year, Pa Pa’s once vivid blue eyes have become dull and faded, and for the family, the process of deciphering his jumbled requests have become an even greater challenge.

The small house Pa Pa built as a younger man is now his prison. There are bolts on the windows and doors to prevent him from escaping into a world that he no longer understands. Behind the house is Pa Pa’s small garden; once nurtured by him, it is now a neglected, overgrown jungle.

Pa Pa’s irrational fears, intensified by the darkness of nightfall, create problems for the whole family. His trembling hands pick up objects seen only by his eyes, his conversations are directed toward people that exist only in his confused world. We, his caregivers, are the only ones exhausted by Pa Pa’s constant wanderings around the house. He is never weary, and seems to have forgotten how to sleep. 

Pizza boxes and newspapers are pulled lovingly from the trash and stacked on the kitchen table; shoes are stuffed into the refrigerator; toothpaste is eaten and chairs are stacked up and climbed as if they were ladders. Magazines, cushions and clothes are scattered around the room. The scene is reminiscent of the chaos a group of five-year-olds might cause at a birthday party.  Illuminated only by the ghostly blue glow from his computer, my husband tries, without success, to escape this endless chaos. After trying on an ashtray for size, Pa Pa suddenly becomes calm and still, the melodic jingle of the dog collar he is shaking fascinates him, but only briefly.

Alzheimer’s is slowly consuming him from within, his ability to sleep, bathe and dress himself, talk and eat are fragmented at best. The torrents of words that now constantly tumble from his mouth have no meaning; all verbal connections with us are now gone. His eyes, although open, are blind to our world, and his body fluids are spilled without his concern.

He is no longer Pa Pa; all that is left is a frightened, confused man who no longer knows his own family. He will eventually forget how to breathe; his death will be our final loss, and although we will grieve for him, we will be thankful. 

Annie Burgamy was a caregiver to her grandfather who was living with Alzheimer’s disease. She wanted to share her experience with other caregivers. Annie wrote, “It is a story of how our family learned there is a loss worse than death, and how bitter-sweet our final release was.”

 

Printable Version