Monday Author: Susanne Skinner
“Alzheimer’s is the cleverest thief, because she not only steals from you, but she steals the very thing you need to remember what’s been stolen.” ~ Jarod Kintz
Alzheimer’s is slow and painful, a lonely walk down a road dissolving into darkness. The road is one-way; no turns no detours. There are brief stops, plateaus that shine light on the disease, contrasting the darkness ahead. The light offers no hope, just a harsh reminder it is the only way to go.
I know more about this disease than I ever wanted to with my sister’s diagnosis four years ago. It steals her away from me mentally while physically leaving her here. Alzheimer’s is a different kind of thief, robbing her memories one day at a time.
What is Alzheimer’s?
I thought I knew, but I only had a small piece of the puzzle. The parent family is the umbrella group called Dementia. Under that umbrella are variations of the disease and one is Alzheimer’s.
Alzheimer’s is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out even the simplest tasks. It is the most common form of dementia.
Dr. Alois Alzheimer, a clinical psychiatrist and neuroanatomist, discovered Alzheimer’s over a century ago, in 1906. He documented changes in the brain tissue of a woman who died of mental illness. Her symptoms were unusual, including memory loss, language difficulty and unpredictable behavior. Examining her brain tissue, he found abnormal clumps and tangled fibers, which are the main features of the disease. He also noticed the loss of connections between nerve cells in the brain and the inability to transmit messages from the brain to muscles and organs in the body.
The Depth and Breadth of Alzheimer’s
When my sister and I began this journey, I learned the depth and breadth of the illness:
- An estimated 47 million people worldwide suffer from Alzheimer’s
- By 2025 the number is expected to reach 7.2 million
- By 2050 it will be close to 16 million
- 8 million are diagnosed
- 6 million are over 65
- Approximately 200,000 are under 65, suffering early onset Alzheimer’s
- Alzheimer’s begins to develop in the brain 20 years before the diagnosis
- Typical life expectance after diagnosis is 4-8 years
- Alzheimer’s is currently ranked as the sixth leading cause of death in the United States
- Every 3 seconds someone in the U.S. develops dementia
- Every 65 seconds someone in the United States develops Alzheimer’s
- Alzheimer’s strikes two-thirds more women than men
- Women also make up two thirds of the care givers for Alzheimer’s patients
These statistics are staggering.
I knew something was wrong, but my sister has Down Syndrome so I wasn’t sure what it was. She was only 52, and the early symptoms did not point to anything specific.
As her legal guardian and caregiver, we began the discovery together, eventually receiving a diagnosis from the Portland Medical Center for Geriatrics. We were fortunate to have a doctor specializing in adults with Down Syndrome and Alzheimer’s.
The Down Syndrome brain and the Alzheimer’s brain share the same unique protein, making the disease an aggressive predator.
Insurance is the biggest hurdle for people like my sister, as most companies refuse to test anyone under sixty without a documented set of indicators. I spent six months documenting symptoms, manifestations and frequency; noting when and where I observed them, and then consolidated the data into a spreadsheet.
After four months, the doctor said there was no doubt in her mind. By the time we received an official diagnosis, the disease had been present for several years and drugs intended to delay symptoms were of no use.
Caring for Someone with Alzheimer’s
There is no cure for Alzheimer’s; it is progressive and fatal. Caregivers require super-human amounts of patience, and compassion, and a well-practiced ability to divert and distract. I constantly remind myself she is not the disease.
People with Alzheimer’s have trouble doing everyday things. As the disease progresses, some become anxious, angry, or even violent. Thankfully, my sister’s beautiful personality is unchanged, even as she slips away from me. I see confusion in her eyes but her gentle demeanor remains.
My heart feels the end of our journey approaching and resists. My bad-ass super-hero self runs after this thief in the night, demanding the return of what it has taken. Her idol, Chuck Norris, would mount a full-on karate black-belt defense, but even he cannot win this battle.
Each day something is missing that was here the day before. I learn to make peace with these changes and love my sister in the moment. Who she is in that moment is all we have. How long the moment will last is unclear. She cannot change the way the disease affects her and the time will come when she is completely gone. Her accomplishments remind me of the amazing gift she is to us.
My sister taught me the important lessons in life: embrace joy, be fearless, eat dessert every day, keep trying, and never hold a grudge. The day is coming when she will not know who I am, and that is my deepest fear. I have learned so much from her, but she has not taught me how to live without her.
Find the Cure
Dementia is the biggest health-care challenge of our generation. Age is the highest known risk factor for Alzheimer’s; cases will increase significantly if population trends continue. An estimated 500,000 new cases will be diagnosed in the U.S. this year. For those 65 and older it is the fifth leading cause of death and the only leading cause of death still on the rise.
There are treatments that help the disease, but there is no cure. We need to find it.