When my father was a teenager, in the late 1930s, he was lying in bed and swallowed a hard candy. It frightened him so much, he was always terrified of choking and said it would be an awful way to go. I wasn’t allowed to chew gum in the car while I was growing up, and every time I coughed while eating I could see panic flash through his eyes.
Dad was diagnosed with Alzheimer’s disease when he was 79. I was in my early 20s. For eight years I was his primary caregiver, until his death in 2012. What first started as confusion, irritability, and lapses in memory slowly led to incontinence, violent outbursts, and aphasia. For the last three years of his life my father couldn’t walk, talk, feed himself, or even hold his head up. I put my heart and soul into managing his care and trying to make him more comfortable and the whole time I knew how it was going to end- he was going to die. Alzheimer’s is a death sentence to the more than 5 million Americans living with the disease. It kills more people every year than breast cancer and prostate cancer combined, and somebody new is diagnosed every 67 seconds. It is the most expensive disease in the country, costing the United States government more than $214 billion in 2014. There is currently no cure or even treatment.
My father was the strongest person I knew. A WWII hero, he rarely talked about his plane going down in the Philippines but when I moved him out of his apartment into the first of many nursing homes, I found the NY Times article from 1942 that told about the accident. “Henry G. Jackson is credited with saving the lives of the whole crew,” it said. Next to the article is a picture of him, 18 years old, beaming in his Marine uniform. He ran or rode his horse well into his 70s, did calisthenics every day, and worked on crossword puzzles while eating breakfast. For years I had no idea that proteins were building up in his brain that would impair his memory, cognition, language, judgment, and orientation. Plaques are deposits of a protein fragment called beta-amyloid that build up in the spaces between the nerve cells, and tangles are another protein called Tau that build up inside the cells. They eventually move on through the brain, shutting down communication between the cells and shutting down every part of the body. That’s what Alzheimer’s disease is. It’s not forgetting where you put your keys, but instead not being able to comprehend how to put a key in the ignition. It’s forgetting that you sold your car five years ago. It’s not recognizing your daughter when she tells you that you can’t drive.
I was told early on that the disease could run its course- basically every system in the body would shut down- or he could fall, or get aspiration pneumonia and die. This last possibility always haunted me. As the muscles in the throat becomes weaker, they are unable to recognize and process food and liquid properly. Particles can get stuck in the airway, and the person can get an infection or not be able to breathe. It’s very common for people with Alzheimer’s to go out this way. As soon as I heard the word “aspirate,” my thoughts went back to Dad’s fear of choking. For years I was terrified that this would happen, and there were several near-misses when the nurse called me to say that he had trouble swallowing and a CNA had done the Heimlich maneuver on him. For the last two years of his life he was on a pureed diet, but he rarely ate the mashed up mush that the nursing home kitchen considered food. He basically subsisted on yogurt and pudding that I brought in and stored in the fridge for him. And the occasional Frappuccino.
Dad spent two and a half years on hospice care, and two years on Medicaid. I spent eight years tied to my phone, worried that he had fallen, gotten lost, hit a nurse, got in a fight with a neighbor, broken his razor, caught an infection, had bedsores or skin tears, refused his meds, lost his glasses, run out of diapers, or been denied by the insurance company. When he was living in his apartment I was going over two, three, four times a day to make meals and check on him. When I finally needed to move him into a nursing home (the first of four), I was still visiting three or four days a week. It was never enough. I could never make him better. We were losing. When he finally closed his eyes for the last time on June 19, 2012, part of me died with him.
Alzheimer’s disease enrages me. It stole my father from me, and made him of shell of who he was. It robbed me of an adult relationship with him. He’ll never walk me down the aisle, meet his grandchildren, or know how much I have advocated for Alzheimer’s education, research, and funding. I hold on tight to the memories of his final months when there was nothing else to do besides sit and be with each other, my hand holding his, me telling him that I love him, and knowing that he was thinking the same thing.
– Carrie Jackson, Green Balloon Foundation Board of Director