Imagine you're walking across an alien landscape where nothing is familiar.
You spot no landmarks; see no recognizable faces—even the sounds you hear are completely foreign.
Alone, confused and frustrated, you sink to the ground and stare at the confusing panorama, unsure of what to do next.
For a person diagnosed with Alzheimer's disease, these feelings of chaos and confusion are frighteningly commonplace.
Harry Urban has lived with Alzheimer's disease for seven years, "We have no typical days. You have your good days, your bad days and your Alzheimer's days," he says, "I could wake up in the morning, get dressed, go into the kitchen—then my world falls apart, I lose all concept of what I'm doing and what I'm supposed to be doing."
It is this uncertain reality—and its impact on the quality of life and behavior of people with Alzheimer's—that Urban and his colleague, Rick Phelps aim to communicate to the world.
"This disease is like cancer used to be—no one wants to talk about it," says 59-year-old Phelps, who was diagnosed with early-onset Alzheimer's in 2010.
From a devastating diagnosis, champions emerge
Phelps knew something was wrong years before his dementia diagnosis, but family and friends chalked up his symptoms to stress.
Once the truth came out about his condition, he describes feeling liberated, "I had something to fight for—something to champion."
And champion he did.
Phelps created "Memory People," a Facebook-based support and awareness group for people dealing with Alzheimer's and other forms of dementia where caregivers and seniors share what it's like to live with Alzheimer's. It's how Phelps and Urban met. Now they conduct seminars on the topic.
Neither man will refer to himself as an "expert," but they admit that no one knows Alzheimer's better than those living with the day-to-day effects of the disease.
Becoming a part of their world
Phelps and Urban offer their responses to some of the common questions caregivers ask them during their seminars:
Q: Are you scared?
Phelps: "Yes, I'm scared of the unknown. I don't know if I have six months to communicate or six years. I worry about going to bed at night and whether I'm going to be as bad tomorrow. This disease is with you 24/7. It's in my brain and I can't get away from it—it is a scary thing."
Q: What daily challenges do you face?
Phelps: "It's probably better for me to tell you what I can do as opposed to what I can't. I can mow the grass—I just love it. It probably sounds trivial, but it's a godsend for me. I even like to go and mow the yards of my older neighbors…I'm not allowed to touch anything that you plug in. I have good intentions, but I can't recognize what's wrong until it's too late. I remember trying to hang a television on my niece's bedroom wall. I forgot to find a stud and it fell off and ripped a huge hole in the wall."
Q: What frustrates you?
Urban: "Making a decision on something. Even if I have strong opinions about something, if you give me choices, I get frustrated. Going to a restaurant and being faced with so many options, I get annoyed. Driving—because I get so confused—I don't know which lane to be in, whether to go left, right or straight. If you take me shopping, I will go crazy because of all the voices, and the strange people all talking at the same time."
Q: Why do you do forget things? Become argumentative? Exhibit bad judgment?
Phelps: "It's important to understand that I don't understand. I don't have any idea why I forget some things and remember others. It's not intentional—I just don't have the ability to realize what I'm doing wrong. If someone came to my house and tried to sell me one of those free phone books for ten dollars, I would give them the money and not think anything of it."
Urban: "You can't argue with me, I'm too headstrong. If I think it's one way, you're not going to convince me otherwise, and the only one who's going to get frustrated is you. But I'm not being nasty—it's just that this is my world. For example, I always have to walk behind my wife when we go out. At first she wanted me to walk beside her, but I have a fear of getting lost so I want to keep her in my eyesight. If someone is talking to me and I'm quiet or I don't acknowledge them it's because sometimes we need to go to our faith place. We're so stressed out by this disease that we need a place to go in our mind to get away from Alzheimer's. But you should always talk to us, we're still in there. You have to know that you've reached us, even if we don't look at you or respond."
Q: How do you deal with the bad days?
Phelps: "You deal with them because there's no other way to deal with them. On my difficult days I can tell that everything isn't what it should be. It's worse during the winter. I get Sundowner's when I'm caged up in the house. It's almost like a migraine, I know something isn't right and I hope it doesn't last long. On those days I stay away from the computer and I don't go out."
Urban: "You would not believe how many hours I sit on my bench outside and think about how I used to do so much, I used to be on top of the world—but I can't think like that. I have to focus on what I can do. I'm here for a reason. I'm trying my best to change people's thinking and points of view. I am trying to change how people treat people with Alzheimer's disease. I'm just hoping that Alzheimer's gives me enough time."
Q: What advice would you give to caregivers?
Phelps: "Accept this disease and accept what's coming down the road. One of the most important things I've learned is that if you or your loved one thinks you might have a problem, then you probably do. Check into long-term health insurance before you're diagnosed, because it's prohibitively expensive afterwards. This disease will devastate you financially. Try to look at the positive in everyone and everything. As bad as this disease is, we've found friends and support."
Urban: "Learn what you can about this disease. I'm not telling you to pick up a book and learn about the different stages. I'm saying that you need to try and learn why your loved one does the things they do. You have to learn to live in our world because we can't live in yours—it doesn't exist for us anymore."
When describing how he chooses to react to the disease, Urban is frank and recognizes his mission "This disease changes you. I don't know what I'm turning into—but I've got my soapbox and I'm getting really good at dragging it out."