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Walking In Their ShoesCommunicating with loved ones who have Alzheimer's disease
By Michael Krauthamer
AuthorHouseCopyright © 2010 Michael Krauthamer
All right reserved.
Chapter OneA Rural Farming Community
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After graduation, I was fortunate to be offered employment in a dual position as Social Service Director and Activity Director working with persons diagnosed with Alzheimer's disease. My first employer, was in a wealthy farming community an hour and a half from my home. The facility owners had researched architectural designs specific to the needs of Alzheimer's disease and built a state of the art lock-down unit. This architectural model correlated with the sociological model of healthcare (person-centered care) that I had studied in college. My first workday was beautiful and sunny and made the "first day jitters" diminish as I drove through the colorful landscape of clouds and hills.
After winding through the unfamiliar, wooded hills, I finally arrived. As I began walking to the door with my laptop computer, I noticed a sign in bold letters: "TO ENTER, PRESS 4321." The security code was designed to keep the residents with moderate and severe cognitive impairment safely inside. When a person reaches this point of impairment, it is important that caregivers provide a safe environment that promotes their physical and psychosocial well-being. Just as important is to maintain their dignity and respect. As I pushed the buttons on the security pad and heard the heavy doors unlock, I began to comprehend the gravity of my new vocation and the uncertain challenges of my journey.
I walked through the doors only to find another set of doors with the same sign. The double doors were designed as a barrier in case one of the residents exited the first set of doors. They were approximately 8 feet apart. As an added precaution, an alarm sounded when any door was opened for a predetermined amount of time. If a resident somehow made it through the first set of doors, it was highly unlikely that they would make it through the second, due to the inability to comprehend, or even see the words that clearly explained how to enter and exit.
Opening the second door revealed a long, narrow hallway decorated in a warm home-like style with richly colored wallpaper, carpeting, and nicely framed paintings. People were walking, standing, and sitting in wheelchairs. At first appearance, the hallway was like any other with people mingling and doing their daily business. Walking down the hallway with a smile, I greeted every resident with a "Good Morning." As I continued walking, I realized that I had entered a world where my reality and the reality of others were in direct contradiction. More importantly, the only reality that mattered was in the minds of these people because that was their true reality.
Several of the residents caught my attention as I wondered about their life history and experiences. Harold, a frail, gray-haired, 94-year-old, was sitting in his wheelchair glaring at me as I proceeded down the hallway and into my new office. Due to his frail condition, Harold was at risk for falling; therefore, he had a pull tab alarm connected to him and his wheelchair to notify staff if he tried to stand.
One day, sitting in my office, I heard a loud commotion in the hallway as a high-pitched alarm blared. I immediately ran to the location where I found Harold and a staff member in a heated argument screaming over the blaring alarm. The staff member was yelling, "Sit down, Harold!" as Harold was yelling, "I don't have to!" It was apparent that neither person was going to win the argument or stop yelling. Finally, a nurse arrived and intervened. In a calm voice, she changed the subject and persuaded Harold to sit down. At this point, it is important to discuss a major rule of communication. Never argue with a person who is diagnosed with Alzheimer's disease. In addition to creating hostility, it can invoke many more emotions, from sadness and loneliness to confusion. Even if they cannot understand your words, they do understand your nonverbal communication and tone of voice. Sometimes they even mirror it. Therefore, it is important that as friends, family or healthcare providers, we monitor our own behavior such as mood, tone of voice, attitude, and mannerisms, especially with those who have lost verbal communication skills or speak in a nonsensical manner. Sometimes they no longer comprehend the spoken word, so it is imperative to enhance communication through nonverbal means.
After reading Harold's psychosocial history and learning more about him, I gained much insight into his previous life. He had been a very successful farmer, and among other animals and crops, he had raised hogs. Although Harold had lived in the facility for more than one year, it was quite clear that he still believed that he was living on his 950-acre farm. In his mind, he was not living in present time but had a very different reality, in which he was still living on his farm. Nevertheless, whatever Harold believed was his truth, his reality, and nothing anyone said could change his mind.
With the information obtained from his social history and a better understanding, I had a meeting with the staff and suggested that when Harold stood up, instead of yelling at him to sit down, they should walk over and ask in a calm voice, "Harold, where are you going?" After my request, it seemed like an eternity before I would hear his alarm sound again. When it did, I looked up and sure enough, he was trying to stand. He was in such a fragile physical state that he couldn't stand, let alone walk. My concern was that he would fall and hurt himself. As the alarm sounded, I ran to him in the hallway. In a calm voice, while making eye contact, I said, "Hey Harold, where ya goin'?" Harold's stone cold eyes glared into mine as he stated, "I am goin' to feed my hogs." Trying to think fast, I said "Harold, I just fed your hogs." With some confusion showing on his face, he said, "You did?" "Yes, Harold, I just walked back in. It sure is cold out there." With that statement, he slowly sat back down as the alarm stopped sounding. Wow, my first experience with validation therapy and it worked! Harold was happy that his hogs had been fed and I was happy that he was sitting down. I couldn't wait until I could try using validation again.
After much observation and many trips to his wheelchair, I realized that there were several reasons why Harold wanted to stand up. As long as I approached him in a calm manner and said, "Where ya goin?" he would always tell me where he believed he needed to go. Whether he needed to feed his livestock, pick up his tractor or go to the bathroom, his needs were always met. Acting quickly was important, because if the staff didn't reach Harold when he had to urinate, believing he was "living on the farm," he would urinate wherever he happened to be.
One day, while walking down the hallway, I heard someone yelling and cursing inside his room. As I knocked on the door and entered, Harold was partially sitting up in his bed, leaning on his elbows and yelling, "Who told those sons of bitches they could drive on my property?" Harold was hearing and seeing the traffic on the street outside the window. His question caught me off guard and I blurted out, "Well, Harold, they put a road on your property." Harold snapped back, "I didn't give anybody permission to put a road on my property! Who did it? They must have paid me good money to put a road there." At that point, the only words that came to my mind were that it was the government and they had a lot of money and needed to put the road there so people could make it to the other side. With that explanation, Harold calmed down and resumed his nap. So, validating that Harold owned the property and using a therapeutic fib stating that he was paid good money for the road was successful. Harold pretty much kept to himself except when he needed something, and didn't associate with the staff or residents except when approached. But he did enjoy it when Cindy and Beulah baked, assisted by the staff, which was usually me.
Cindy and Beulah
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Cindy and Beulah were roommates but that was their only common tie. In the past, both women had worked, raised families, and had many similarities, but they could no longer verbally communicate so they lived in separate worlds. Both Cindy and Beulah had very supportive families who provided a great deal of social history. But when Cindy spoke, she was usually nonsensical, and Beulah never verbally communicated.
Cindy had beautiful gray hair that she had set every week by the facility hairstylist. She dressed well and had an insatiable curiosity. She enjoyed baking, spending time with grandchildren, and walking up and down the hallway. In the beginning, I believed that Cindy was a "classic wanderer." A classic wanderer is someone who walks aimlessly without destination or concern for safety. They continually walk for no known reason. But after interviewing her family, I discovered she had been in an automobile accident many years ago. Doctors had told her she would never walk again. But Cindy defied the odds and recovered. From then on, she walked everywhere. She walked to work, to purchase groceries, and thoroughly enjoyed walking. During her walks, if I would ask her where she was going, she would either ignore me and keep walking, or reply in a nonsensical manner. I tried to pick out words she repeated often but usually I could not make sense of the few words she spoke.
Sometimes we would walk together until we arrived at her destination, which was one end of the hallway or the other. She never stopped or slowed down while walking so I walked alongside her as we talked. Cindy didn't speak often, but sometimes when I asked her a question, she would reply. She usually sat alone wherever she decided except on her frequent walks that usually took place during the most inopportune times, such as meal times.
She always appeared to be looking for something to do, or somewhere to go. Because she really didn't verbally communicate, the nurse decided to place a life-like baby doll in a small crib in one of Cindy's usual destinations. Sometimes a person picks up the "baby" and sometimes not. The next time Cindy wandered to her usual destination she walked back holding the baby doll in her arms just like a newborn mother. From then on the "baby" was always with her. Taking care of this baby was Cindy's responsibility. Cindy had raised three girls and knew exactly what to do. She changed the baby, dressed the baby, fed the baby and most importantly, she loved the baby. Although it became difficult getting the baby from her so the staff could clean the dried foods from the mouth, or change soiled clothing, we could see the positive change in Cindy's life since she found this doll who she truly believed was a real baby. One day the nurse noticed that Cindy was not acting like her usual self. She appeared very upset and distraught while talking to the baby.
On this day, she was speaking in a nonsensical manner but was clearly concerned about the baby's health. Cindy was saying in a distressed, frightened tone that sometimes babies can get sick and die, and other horrible comments. At this point, the nurse and I decided we must go into Cindy's reality to try and resolve her negative, frightened state of mind. We had never witnessed Cindy this upset, and sat down with her and the doll. The nurse had a thermometer, tongue depressor, and stethoscope. The nurse took the doll and explained to Cindy that she was a nurse and was going to give the baby a physical exam. As the nurse checked the baby's heart, temperature, mouth, eyes, and ears, she clearly explained each procedure to Cindy. After she was finished, she assured her that her baby was in good health. Cindy smiled as we returned the baby to her arms.
Later that day when talking to her family, we learned that several years before, Cindy had been taking care of her grandchildren and gave one of them the wrong dosage of medicine. The child was rushed to the hospital. Once again, this situation illustrates the need to know social histories because you can better understand the reality the person is living in. This knowledge becomes very important when validating someone's feelings or using a therapeutic fib.
Beulah, whose hands had a tremor, never verbalized and rarely made eye contact but would sit with the group when we were doing activities. Usually, she wouldn't participate but when given a magazine or book, she would stare into the pages, turning them as if she were reading. Every day, I would tell the residents that I was going to the post office and if anyone wanted to write a letter, I would mail it. Of all the people, I never would have guessed that Beulah would have accepted my offer. When I talked to Beulah, I didn't know if she even heard or understood what I was saying, but every time I would say I was going to the post office, Beulah would write a letter. I would give her paper and a pen and she usually spent around an hour composing her letter. When she was finished, I would take it and tell her I would mail it. All Beulah's letters were dated in the 1950s. Although she wrote each sentence twice and her writing was very shaky, her family was surprised that she could even write and amazed that her writings were historically accurate. The family was given a sense of hope that somewhere inside, their mother still remained. Once we knew that she was living in the 1950s, we could discuss current events in her reality. In addition, we found music from the era in which she lived. Beulah enjoyed this music immensely. While Cindy and I baked, Beulah would sit as if no one were there and read, while Harold and Ralph sat and waited for us to finish so that they could eat.
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One day, a family visited and discussed with me the possibility of moving their father into the facility. Ralph's wife had died two years ago and he had lived alone since her death. He was a farmer still living on his farm in a small rural community. His neighbors, who lived about a mile from his home, were trying to watch out for their neighbor but it was difficult. They noticed Ralph was not getting more and more chores done around his farm, and many times in the evening they would drive by and there were never lights on in his home. Ralph had lived his whole adult life on this farm, raising a family and running his business. In fact, he was still trying to take care of the farm, but according to his neighbors, he was becoming more and more confused and forgetful. He was still driving until one recent day when he became lost and didn't know where he was or how to get home. Ralph stopped at the local hardware store to ask for directions. Luckily, an employee at the hardware store knew him, drove him home, and contacted the family.
The family, who lived over an hour away, became concerned for his well-being and decided to look for a safe place for him to live that was close by them. The family provided a great deal of information concerning Ralph's social history. I cannot emphasize enough the importance of obtaining a social history for all residents entering a healthcare facility. Also, it is vital to confirm the history if you are unsure of its accuracy.
Because Ralph was in the beginning stages of Alzheimer's disease and could not move in with his family, we discussed the importance of preserving his dignity and respect during the move. We used "therapeutic fibbing" so Ralph would believe that he was making his own decision and was part of the moving process. After all, he was an adult who had raised a family and successfully worked his farm. He was just becoming confused.
More importantly, he understood his situation and the need for assistance. Nevertheless, the decision to move from his farm was a difficult proposition, even if he would be closer to his family. So there was no way that we would treat him like a child and make his decisions for him, or allow him to believe we had. We hoped he would believe he had made the decision. At this point, we scheduled an interview for Ralph to tour the facility.
Excerpted from Walking In Their Shoes by Michael Krauthamer Copyright © 2010 by Michael Krauthamer. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
The Journey Begins....................1
A Rural Farming Community (Harold)....................3
Cindy and Beulah....................9
Juanita and Mary....................29
The Inner City (Gladys)....................41
Hazel and Ruby....................51
Don and Alonzo....................61
Phyllis and Mildred....................69
Judy and a Paranoid World....................75
Most Helpful Customer Reviews
This book is a very effective tool in helping to better understand Alzheimer's. It is an easy read packed with specific examples of various behavioral situations and how to remedy them. It helped me to communicate more effectively with my mom-in-law by showing me that I must "re-train" my brain to assimilate her reality. Also, some of the situation examples helped in validating what we were witnessing from a family's perspective. The author is obviously very compassionate and has a thorough understanding of the nature of this devastating disease. Thank you, Michael Krauthamer!
A short, but touching book on how to relate and connect with people suffering from Alzheimer's. Practical advice and strategies are presented through heartwarming anecdotes. The author's experience in the field and his exposure to many different patients make this book a must read for anyone who wants to understand this tragic disease.
This book is a must have book for anyone caring for someone with Alzheimiers Disease. The author goes into detail on different approaches to take and also talks about therapudic fibbing which is a must needed approach for anyone with Alzheimiers. This is a book you will not be able to sit down after you start on it.