Being There

BUILDING IDEAS is dedicated to exploring the various ways the environment influences and impacts on individuals with dementia and the settings they inhabit/experience. While the major topics covered in each column will be related to the theme of each issue, I invite you to write in with your quirky questions, sticky issues, persnickety problems, and creative or brilliant ideas. Let this be a forum for sharing with others as we travel along our journeys with Alzheimer's disease and related dementias.

I must confess, I don't have Alzheimer's disease. So I can't tell you, in my own words, how the world looks to someone who has dementia. But given that the theme of this issue is "The Lived Experience of Dementia" I thought I would share three stories with you-stories that might give us some insight into what it is like from the perspective of the person with dementia/their perspective.

The first story comes from the book My Journey into Alzheimer's Disease by Robert Davis. After having been diagnosed with Alzheimer's disease, and finding it necessary to retire as minister of his church, Robert and his wife decided to take that cross-country trip they had always planned on doing once they had the time. Unfortunately, their timing was such that they arrived in New England on the peak fall "leaf peeping" weekend, and there was not a hotel room to be found for 300 miles. After spending one night taking turns sleeping in the car and walking the aisles of L.L. Bean, they found a hotel for the next night and checked in as soon as they could. Robert's wife Betty, who helped in writing the book, described what then happened.

"As we carried our things into the motel room and I collapsed on the bed, thankful for a place to stretch my weary body, Bob just stood by the dresser. As I looked at him, my heart was gripped by an icy terror. The look on his face was one I had seen so often on his mother's face. How can I describe it? Empty, confused, blank, perplexed, unmoving. Yes, all of these. I said "Honey, what's wrong?"
He replied in the most pitiful, childlike, pleading tone, "I can't find the bathroom." I went to him. "It's right here," I directed.

After two hours of sleep he was "back again." That look did not appear until a week later after another too-long day of driving. We were already on our way home after only two weeks away. We had learned that we needed to learn some more about our limitations and also travel at a less crowded time. This time, the "look" occurred as he picked up the ice bucket and again stood glued to the floor. "What's wrong?" I asked. He replied "I can't find the door." I showed it to him, and he replied "Oh, I thought that was the door to the adjoining room." Needless to say, I propped the door open so he could find it on his return from the ice machine, which was only three doors down the hall" (p 79-80).

The second story comes from Carol Hocevar, an inspiring woman who is facing the challenge of Alzheimer's Disease. Having been a 5th grade school teacher for 38 years, Carol has had to retire because of her dementia. But the skills she developed as a teacher are serving her well now. When faced with her increasing inability to follow recipes to make dinner, she and her caregiver Sharon took their favorite recipes and rewrote them in clear and concise steps ("Take the chicken out of the refrigerator at 10:00 in the morning") on cards, which they then laminated. Now, when she does a step in the process, she draws a line through it so she knows it was done. When she's all through, they wipe the card clean and it's ready to use next time. Carol only remembers something that she has written down. If she wants to go to the kitchen for a drink of water, she knows she needs to write it down on one of the many pads of paper that are kept around the house. If she doesn't, by the time she gets to the kitchen she may have forgotten what she wanted. When she gets the water she crosses the note off. She still drives, but only to places she can visualize the whole path to. "If I can't see the path, I don't go there."

Used to being busy and helping others, Carol found being home all day was not very satisfying. She now gets a kit from the library each week, which has ideas for songs and discussions, and occasionally a video, which she organizes into a short program. On Tuesdays, Wednesdays and Thursdays she goes to a nearby adult day program or local assisted living facility for people with dementia and runs the program. There's no pressure that she has to "be right", the people seem to enjoy it, and it gives her a tremendous sense of accomplishment, knowing she's brightened their lives a little bit. This also provides important structure to her week; it helps her to keep track of time/, so it helps her keep track of time.
"Structure is so important." Carol told me, "I have a central place in the kitchen where I keep my daily calendar. I write everything down in it that I need to do. It's my mind on paper-my memory."

Not everything is easy. Carol says it's hard to let go. "I used to be a 'dot the i and cross the t' kind of person-being a schoolteacher for all those years. But I'm learning that it's vital to be able to let go of things when they're not that important. I have a good cry, and then just say 'OK, that's something I can't do any more." But when something is important, like her ability to cook dinner, she and Sharon find a way to make it work. Reading was also a passion for Carol. She fit it in around her busy schedule while she was teaching. And when she retired, she thought she'd have lots of time to read. Unfortunately, now she can't always keep track of the characters or the plot of the story. Rather than give it up, or just read simple stories, she discovered books on tape at the local library. Now she can listen to the book, and when she misses something, she can rewind the tape to listen to what she missed the first time. Or, if it's not important, she just goes on. "It's not like I have to write a book report on it or anything. There's a difference between a threat and a challenge. If there's something I have to do, and I can't, then that's a threat. And I learn how to let go of it. I tell myself I did it well when I could. But I can't now, so I just let it go."

The third story is my own, from almost 20 years ago, which was about the time that plastic 'credit card' type keys were being introduced into hotels. The hotel clerk who handled my check in asked, as she handed me the key, if I needed instructions. I said no, I had used them before-which I had, once. I must admit to feeling, not smug exactly, but like an experienced traveler. When I got to my room, I inserted the card, removed it and turned the knob to enter (this was before the days of ADA-required lever door handles). Well, the door knob turned and turned and turned, but never "caught" to unlatch. "OK," I thought to myself, "you must leave the card in the slot." So I inserted the card, left it in, and turned the door knob, and turned and turned. "Maybe you insert the card and pull it out quickly." Turn, turn, turn. "Maybe it requires a slow motion." Turn, turn . . . well, you get the picture. I was beginning to feel very foolish. After all, I had a Master's degree in Architecture! I ought to be able to figure out how to open a silly hotel door!!! After almost five minutes of trying, I finally humbled myself (that's honestly what it felt like) to asked a housekeeper down the hall for assistance.

"Oh everyone has that problem at first. You have to insert the card" (I nodded, knowing this was the first step) "pull the door and turn the knob." She very nicely walked back with me, and we tried the recalcitrant door. It opened very easily, just as if it had not just caused me much gnashing of teeth. I thanked the housekeeper and went into the room, feeling like a total fool. I was embarrassed at having to ask for help over something as simple as opening a door. The more I thought about it, the angrier I became. It wasn't my fault, after all. It was a dumb design. You don't usually have to pull the door to make the doorknob catch so it will open up. It's not my fault at all. Feeling a little more righteous, I sat down on the bed, and gave it a little more thought.

Why had the experience upset me so? A couple of reasons. First, I KNOW I know how to open a simple hotel door. It's not like I was trying to break into Fort Knox or anything complicated. But I couldn't make the process work. I couldn't make the key that the hotel clerk had given me work the way I knew keys were supposed to work-even keys that look like credit cards. It was also my pride. I hated having to "embarrass" myself to ask a housekeeper (it would not have mattered who I asked, she was just the first person I saw who might know how to make it work). I considered (and still do) myself to be quite environmentally astute. I seldom lose my way, and can fix a lot of things easily. So it hurt my pride to have to ask for help on something supposedly as simple as this.

And then, sitting there on the bed in that hotel room, I realized I had just been given the opportunity to experience-on a small and temporary basis-what it's like for people with dementia. Struggling to make something work, something they KNOW they know how to do, but simply not being able to make it all come together and work. The frustration, the hurt pride, the embarrassment. Now, I had a sense of what it was like for them. However, for me, it was a single experience-not an everyday occurrence.

How we face our challenges is as important as the what challenges we face. Some people freeze up with fear and terror, as when Robert could not find the doors in the hotel rooms. Others are ruled by emotion, as demonstrated by my near catastrophic reaction to not being able to complete a task I thought should be simple. Others, such as Carol, are able to recognize passing capabilities, and let go with dignity.

Everyone has these types of experiences over the course of their lifetime. People with Alzheimer's disease face it on a daily basis, and struggle to make sense of an increasingly complex and foreign world. It's not the experience that matters. It's what you learn from it, how you handle it, that's important. So I invite all of you to take a moment, think of an experience you have had that gives you insight into what it is like to live with Alzheimer's disease or another dementia, and share your story with others. Think about whether there are ways you can alter the environment to reduce the frustration it can cause someone with dementia. Do things work in simple, easy to use ways? If not, how can you modify it to make it easier for someone with Alzheimer's disease or a related dementia? Remember, you can make a difference in someone else's life. That's what being a caregiver is all about.

Margaret P. Calkins, Ph.D. President, I.D.E.A.S., Inc.: Innovative Designs in Environments for an Aging Society. IDEASgroup@aol.com. Reprinted with permission from Aspen Publishers, Inc., Alzheimer's Care Quarterly (ACQ), Volume 2, Issue 2. Order by calling 1-800-638-8437 or on-line at www.aspenpublishers.com/journals/acq.

I would like to thank Tyndale Publishers for giving permission to quote from My Journey into Alzheimer's Disease, ©1989, by Robert Davis. All rights reserved. I would also like to thank Carol Hocevar and her caregiver Sharon for sharing their stories and brilliant ideas with us.