If you have a parent with Alzheimer’s disease, you might sometimes wonder what life is like from his or her perspective. Does the person you have known and loved all of your life still exist behind those eyes? Do they still know and love you?
You may have read all of the literature written by experts, who try to describe all of the nuances of the disease, but it always seems to describe Alzheimer’s from an observer’s point of view rather than from the person actually experiencing the disease.
What Science Says Alzheimer’s Disease is Like
While the experts paint an incomplete picture of the Alzheimer’s experience, the information from researchers can help you understand what your parent is going through. Alzheimer’s disease is a type of dementia, which is an umbrella term for several conditions that cause memory, thinking and behavior problems serious enough to interfere with daily life. According to the Alzheimer’s Association, Alzheimer’s is the most common type of dementia accounting for 60 to 80% of all dementia cases.
Alzheimer’s is a brain disease. It starts by affecting the neurons of the brain. Neurons are specialized cells that send messages between different parts of the brain and from the brain to the rest of the body. Alzheimer’s disease disrupts the lines of communication between these neurons; and in time, the neurons stop working and eventually die.
Alzheimer’s disease is a progressive condition, which means it gets worse over time. Neuron damage usually starts in the areas of the brain responsible for memory. Later, the damage spreads to parts of the brain responsible for language, reasoning and social behavior.
As the brain damage associated with Alzheimer’s progresses, your parent will experience worsening signs and symptoms. In the earliest stages, your mother or father will experience mild memory loss and forget recently learned information. Your parent might forget something he or she learned on the evening news or ask you for the same information repeatedly. Your mom or dad may feel embarrassed by these memory lapses, or even upset if the memory lapses have annoyed or inconvenienced the family.
Later on, damage to brain cells causes your parent to forget how to complete everyday tasks, such as driving to a familiar location or managing a budget. Your parent is probably becoming more distressed as memory lapses prevent them from managing their lives. Advancing cellular damage and memory issues may cause your mother or father confusion with time or place; they may lose track of time or forget where they are.
In the advanced stages, your parent may have trouble understanding visual images and spatial relationships. They might struggle with reading, judging distance and determining color or contrast. This can make simply walking to the bathroom seem like a very frightening and dangerous excursion.
Alzheimer’s disease also affects judgment and decision-making. Your parent may give all of his or her money to a telemarketer simply because it seems like a good idea at the time.
Inside the Mind of Someone with Alzheimer’s
When you are with your parent, you probably catch momentary glimpses of who they used to be and you cherish those little moments when you recognize the person inside. In that same way, your parent may recognize you or remember who they are for a fleeting moment, but then the precious memory dissolves away. Do you ever wonder where your parent goes when he or she fades away?
You are not alone. About 8.5 million people are living with Alzheimer’s disease, according to the Alzheimer’s Association. This means there are millions of children who are looking into their parent’s eyes from the outside and wondering what Alzheimer’s is like from their perspective.
The first step towards empathizing with your parent’s experience with Alzheimer’s disease is to understand that nearly every aspect of human behavior is associated with memory. We can cook a meal only when we remember that our food is in the refrigerator, for example, and only after we remember how a stove works. Humans communicate with one another by memorizing words and their meanings. People can make and carry out complicated plans because they can remember how to do the simple steps they learned long ago. We know who our friends and family are because we remember their faces, voices and experiences together.
Alzheimer’s is a brain problem that is robbing your parent of the ability to remember things. In the beginning, your parent might struggle to remember the right word. Over the course of months or years, your parent may forget how to do everyday activities, such as dressing or preparing a meal. Accomplishing small tasks can take longer too, because Alzheimer’s disease makes it difficult to concentrate.
Your parent will get lost in familiar places. At first, they might take a wrong turn while driving to the grocery store where he or she has shopped for years. Your parent may not recognize his or her own home at times. Eventually, your parent can get lost in the bathroom. This is terrifying for many people with Alzheimer’s disease.
Alzheimer’s will rob your parent of the ability to know how to behave in a given situation, simply because they may not know where they are, recognize who they are with or what is about to happen. Your parent behaves abnormally not because he or she does not want to , but rather because they cannot – the cellular damage and memory loss causes your parent to experience a different reality from your own.
Memory loss continues as the disease progresses so that, after a while, your parent cannot recognize you or other members of the family. In the end stages of Alzheimer’s, the brain and body forget how to function. Your parent may forget how to do essential functions, such as swallowing. Sadly, Alzheimer’s is fatal.
What’s Behind the Aggression?
Some people with Alzheimer’s disease feel periods of intense anger and frustration, which can result in physically or verbally aggressive behavior. In fact, aggression occurs in about half of all people diagnosed with dementia. Sometimes there are identifiable causes for your parent’s aggressive emotions and behaviors, and your parent may seem to feel aggressive for no reason at all.
Physical discomfort, environmental factors or poor communication are frequent causes of aggressive emotions and behaviors. Urinary tract infections and certain other painful medical conditions are common in people with Alzheimer’s, but communication problems associated with dementia prevent your parent from telling you about the pain. In fact, the Alzheimer’s Society says that urinary tract infections can actually cause acute confusion and delirium.
In other words, your parent may be acting aggressively because he or she is in pain, feels hungry or tired, or is frightened or confused and not necessarily out of anger.
Learning What Alzheimer’s is Like
People with Alzheimer’s disease are now sharing their stories online in hopes of helping others understand what it is like to have the condition. Rick Phelps shared his story with AgingCare. He invites readers to imagine they have taken the drug Versed, which doctors administer prior to procedures to make patients feel sleepy. The medication also produces short-term memory loss.
Then Phelps asks readers to imagine they have awakened in a building where they have never been before, surrounded by furniture that they have never seen. After five minutes alone, a parade of complete strangers enter the room and talk to you as if they know everything about you. One person talks to you as if you are his or her spouse, and another treats you like their parent. They each assure you that everything will be okay, and that they are sorry for your loss. You have no idea of who they are or what they are talking about. Finally, everyone leaves you alone, groggy and confused, trying to figure out what just happened.
These episodes come and go at first, but since Alzheimer’s disease is progressive, your parent experiences them more often and for longer periods. Eventually, they will feel lost and confused most of the time.
All along, your parent realizes that this is happening but there isn’t anything he or she can do about it. Your mother or father probably spends time thinking about what will happen when they can no longer remember who they are, and even more time worrying how painful it will be when they can no longer remember who you are.
Technology Brings the Alzheimer’s Experience to Life
Technology is helping expand awareness of what it is like to experience Alzheimer’s disease and other types of dementia. Researchers have developed a virtual reality (VR) simulation that could help students gain a better understanding of and greater empathy for older adults with dementia. The Los Angeles-based company Embodied Labs now offers the Beatriz Lab, a virtual reality journey through Alzheimer’s disease. Learners wear a special VR headset that allows them to see and hear what Beatriz, a fictional math teacher who is in her 60s and has Alzheimer’s disease, experiences and thinks. Users can even move Beatriz’s hands, thanks to a camera mounted to the headset.
The interactive computer-generated simulation takes users through the advancing stages of Alzheimer’s disease over the course of ten years, as seen from Beatriz’s perspective. In the early stages of the condition, she begins to struggle when teaching math in her classroom. Later, she sits in the park with her grown daughter then grows paranoid that her child has stolen her purse. As the disease progresses, users are with Beatriz as she sits in her living room when suddenly a roar fills the air and the shadow of a man jerks violently against the wall. Terrified, Beatriz cries out for help. Her daughter appears in view to reveal that the roar was just the noise from an electric fan and the shadowy figure was merely light and darkness playing off the curtains.
The virtual reality simulation also teaches students about the various Alzheimer’s-related changes to a person’s brain and body. During a voice-recognition segment in which the user interacts with others, the simulation jumbles the users’ words. This helps users understand that people with Alzheimer’s know what they want to say, but the words just come out wrong.
Using virtual reality technology and reading first-person accounts can help you understand what Alzheimer’s is like for your parent, but the best way to find out what your mother or father is experiencing is to talk with them. Listening and observing your parent can shed light on what he or she is feeling, even if they cannot tell you themselves.
Alzheimer’s Care at Forest Hill Retirement
The caring professionals at Forest Hill in Pacific Grove, CA, understand what Alzheimer’s is like for your parent. They have created an environment that helps people with this brain disease feel safe and comfortable. For more information about Alzheimer’s disease and the resident-focused care provided by our friendly staff, contact Forest Hill today.