The Unluckiest Lottery | Healthy Aging Series: S10 E18
I Got Lucky
I almost burned down a church once. Okay, okay, relax. It was an accident. I was the pastor of a little Baptist church in Arch, New Mexico. That was forty years ago.
One of my duties as the young pastor was to baptize new converts. The baptistry was behind the pulpit area and needed to be filled and heated with, basically, a heating element from a hot water heater. I filled it and heated it. No problem. But later, when I drained it, I failed to turn off the heater and it, well, it melted onto the fiberglass baptistry. Even I knew that it could have caused a fire. I got lucky.
I replaced the heating element, patched the fiberglass and held my breath. No one noticed. I got lucky. This is the first time I’ve shared this story.
I’ve told the story already about winning $12K playing 3-Card Poker, but that’s the extent of my luckiness with gambling. I’ve played the Powerball many times. No luck. Honestly, I’m not sure what I’d do with all that money. I’ve seen it ruin lives.
My Father’s Brain
I’ve been writing about the aging brain this season, which is entitled, “It’s All About The Engine.” More recently, I’ve been writing about Alzheimer’s Dementia. I want to share some unlucky numbers that I gleaned from two books. One of the books is a dementia memoir written by a caregiver and it’s entitled, “My Father’s Brain,” by Sandeep Jauhar. The other book is entitled, “Ahead of Dementia,” by Luciana Mitzkun, which is a step-by-step guide for family caregivers.
Alzheimer’s Unlucky Lottery Numbers
First, let’s look at the unlucky numbers: 6, 1, 10, 65, 15, and 2050
Here’s what they stand for: Currently, there are 6 million individuals diagnosed with Alzheimer’s in our country. That’s 1 in 10 over 65 years old have Alzheimer’s, and there will be 15,000,000 by 2050.
Part of the reason for the increase over the next 25 years is because people are living longer. There have been some minor advances in treatment, but the problem with Alzheimer’s is, once you develop the symptoms, they are irreversible.
Let’s look at the books.
“My Father’s Brain” is the heartbreaking story of Sandeep Jauhar’s journey through his father’s Alzheimer’s and more accurately the journey he and his siblings experienced. This is the disease that stole their father.
I’ve organized this episode into three major points: conflict, communication, and confusion.
Conflict
It was painful, watching the conflict between Sandeep and his siblings. Like all families, they loved their father and were grieving their loss as he slowly slipped away, but they all had different ideas of what his care should look like. They argued often. They argued with each other about telling fibs or white lies. I’ll talk about that under the communication section below. Things devolved.
That night we met for dinner at his house. My father was in my mother’s old recliner in the living room quietly watching TV, while the rest of the family, including my sister, who flown in from Minneapolis, was seated at the dining table. Midway through the dinner, he finally spoke. “Where is your mother?” he said. He hadn’t mentioned her in months. My brother quickly got up. “Mom isn’t here,” he said. “Where is she? my father demanded. I put down my utensils and went over to him. “Dad,” I said quietly kneeling beside him. “Mom died three years ago.” He looked at me like I was crazy. “She flew with me to this place one month ago,” he cried. “Call the airline. Ask them. There was a passenger. What happened to her?”
They argued about if and when to place their father in a nursing home. They argued about how to handle palliative care, whether to provide an IV saline solution when he was refusing to eat or drink. They decided, with a help of a hospice nurse to withhold it, and he died a few days later.
Maybe it’s supposed to be difficult to decide these things. Sometimes the choice is obvious and sometimes it’s not.
Communication DARE (Don’t Argue, Reason, or Explain)
I’ll bring in the Mitzkun’s manual at this point because it provides one alternate way of telling the truth. DARE is a humane and caring strategy for communicating with a loved one with Alzheimer’s dementia. DARE stands for: Don’t Argue, Reason, or Explain.
Mitzkun and others have suggested something like therapeutic fibbing. But DARE is a little different. It’s about information. “Since dementia,” she writes, “causes problems with language, dementia patients have difficulty finding simple words, formulating sentences, and comprehending what they hear. Too much information can cause them to become anxious, agitated, or act out their problematic behaviors.” Here are her suggestions:
Don’t Argue
“People with advanced dementia,” she writes, “simultaneously experienced cognitive decline in their reasoning skills and heightened emotional responses. Memory and perception become skewed, and facts, dates, cause, consequence, and logic become increasingly less important. To avoid confrontations, the caregiver must learn to suspend the need to be right and use strategy and finesse to handle difficult situations, refocusing and redirecting a conversation.”
Don’t Reason
“When you try to reason with a dementia patient the caregiver sets the stage for failure,” she explains. “Dementia patients are unable to follow reason. Not because they don’t want to, but because they can’t.” “As a general rule,” she writes, “caregivers must avoid the word ‘because.’ Every time ‘because’ is used it inevitably will result in an unsuccessful attempt to connect cause and effect.”
Don’t Explain
“When a caregiver explains something to a loved one with dementia, she is using a train of thought that the patient simply cannot follow. Explaining often involves multiple steps that lead to a conclusion or a goal. As dementia progresses, the ability to follow sequence is diminished; the more steps involved the more difficult it becomes to understand an explanation.”
And so she suggests using fibbing. “Fibs,” she explains, “are concocted scenarios that can be used to help the patient overcome confusion and agree to accept help. They are most helpful in dealing with resistance to care, especially in the moderate to late stages of dementia.”
Maybe I should’ve made this communication my first point because in some ways, it is probably the most significant.
Confusion
People with Alzheimer’s dementia become confused about many things. They become confused about people, places, and things. They become confused about where they are and where they are going. Hence, they need to stop driving and they begin following a caregiver, displaying what some call shadow behaviors. This confusion leads to more conflict.
Maybe that is the ultimate insult of Alzheimer’s dementia. Endless loops of confusion. Complete and total disorientation. Complete and total disorientation about people, places and things. Sandeep and his two siblings were tormented by their father’s confusion.
Watching the devastating confusion that is brought on by Alzheimer’s Dementia, must feel a little bit like one of those devastation reels that show a wall of snow encompassing a skier in the distance. It is truly a feeling of absolute helplessness that you feel while watching them die.
Conflict. Communication. Confusion.
Such is the plight of people with Alzheimer’s Dementia and the burden of their loving family members.
I have tried to share the lives of people with Alzheimer’s and share the lives of their families. Both experience this devastating disease. I have one more dementia memoir that I’ll be sharing and then, an episode about your brain on nature.
Stay tuned.
