As persons with early-stage Alzheimer's are speaking out—online, in support groups, and in publications—we are learning more about what they are experiencing—physically, cognitively, emotionally, socially, and spiritually. How great it is that they have a “voice,” but also it is helpful for everyone to be able to understand Alzheimer's disease better from an inside perspective.
We generally know about the symptoms of Alzheimer's (confusion, memory loss, difficulty concentrating, and functional changes, such as difficulty following directions, laxness in self-care, and loss of interest in social events). However, we are becoming more aware of how each person initially shows different degrees of symptoms. For example, one person's primary symptom might be expressive language—being able to say what one wants to say—whereas another person's may be short-term memory loss. There is a saying nowadays that if you have met one person with Alzheimer's, then you have met one person with Alzheimer's. In other words, each person has a unique set of symptoms. Thus, we are cautioned not to generalize about the person and not to expect the person will act like every other person with this brain disease. We are encouraged to respond to what the person says or does rather than what we think the person may be experiencing; to view this person as unique, just as we did before the person had the disease.
Core of the Person
When speaking out, persons with early-stage Alzheimer's emphasize their “personhood” or humanness. Just as cancer or heart disease does not make the person, Alzheimer's does not define the person. People living with the disease will always keep their core personality and spirit, which make them who they are. They hope we will continue to see and connect with the essence of the person they have always been—who is so much more than a set of symptoms.
While persons with early-stage Alzheimer's hope we will see beyond the Alzheimer's and remember the persons they are, we know they are grappling with their new and changing sense of self. As one person who was recently diagnosed explained, “It's the loss of oneself while one is still alive.” We see people who have felt pride in their skills such as woodworking who have lost the ability to handle tools and instructions capably. They experience a profound sense of loss when they realize they have lost their competencies. They are left struggling with the existential question of “Who am I?” especially if they have been more self-defined by their job, what they do, or their accomplishments.
At the same time this is happening, people in the early stage of Alzheimer's may also be losing the ability to navigate around their community, on foot, or in the car. Things become unfamiliar to them. It is as if the ground underneath them is shifting. Can you imagine how unsettling and even frightening this could be? It could feel like being lost in a forest without a compass. To complicate this, the course of Alzheimer's is unpredictable: a person can have good days and bad days. One day a person may remember if he has taken his medication, the next day he is unsure. This uncertainty, confusion, and vulnerability may result in a person becoming restless, irritable, frustrated, and/or anxious.
In general, in the early stage of the disease, people describe a growing loss of control they feel. They no longer feel like they are the “captain of their ship” because they lack the information and skills to make decisions and take action. They feel more dependent on the people close to them for household tasks, finances, and following doctors' orders, for example.
People in the early stage may begin to withdraw socially because they are unsure what may happen, what is expected of them, or have difficulty following a conversation. At the same time, friends and family members may begin to pull back socially because they are having a difficult time adjusting to the change in the person with early-stage Alzheimer's. This may result in the people with the disease feeling lonelier and more isolated. As importantly, however, this social isolation negatively affects the spouse or partner who needs social interaction and emotional support.
It seems the people with early-stage Alzheimer's who are speaking out are people who are more self-assured. They seem to be tackling this disease as they would any other life challenge. They want to learn as much about the disease as possible so they are better able to respond to situations and prepare for the future. They seek out community resources that would be useful now and down the road for themselves and their spouses or partners. They are asking for support groups so they can meet people who are on the same journey as they. When they meet these people, they gain solace that they are not alone and that others understand what they are experiencing and feeling. They gather strength from being able to talk about their changes and worries in a safe setting free of judgment.
What is amazing is what the people in the early stage are saying. Sure they are grieving their losses—of jobs, sense of self, friends, skills, and independence. But overriding these feelings are statements full of hope and optimism. They have not taken the diagnosis of Alzheimer's as a death sentence. Rather, they have recognized they still have so much living to do. We hear them discuss how they enjoy each day, perhaps more than when their lives were so busy. They use their five senses more to appreciate the little things in life, such as a butterfly flitting on the flowers in the garden. We hear them explain how they might have simplified their lives to make it more manageable and feel more secure. We listen to their gratitude for the love and support they receive from loved ones. And we listen to them laugh—not just at a good joke but also at some of the silly things they do or say. What a blessing they have kept their sense of humor. What a gift they have to be able to laugh at themselves.
These folks may have some rocky days ahead, but somehow they will manage well because of their resilience. They have taken the “bull by the horn” and decided “I'm going to deal with this.” They have been proactive and positive.
These “early-stage pioneers” are courageous. Just as the pioneers in the U.S. were in the 1800's, to a great extent, these folks are forging into uncharted territory with few resources or comforts and many unknowns. What they are leaving for those coming behind them are more community or emotional “maps” about lies ahead and how to navigate the land.
They are speaking out to fulfill their own needs, but we will all benefit from their actions. They are raising awareness among the public, policymakers, and legislators about their needs and issues. They are advocating for increased research and services with a passion unparalleled by professional lobbyists. They are informing health care professionals on how to treat them. They are buttressing the infrastructure for spouses, partners, family, and friends to build a support network. We are grateful to these early pioneers and wish them well.
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