Help! What Do I Do Now?
Caring for Your Loved One with Alzheimer’s
Smashwords Edition
©2010 Nancy Nicholson
Visit the author's website at www.nancynicholson.net
ISBN: 978-0-9665912-2-4
Lillie's Lovely Little Publishing Company
Editor: Lillie Ammann
Cover Photo: Alexander Raths, Dreamstime.com
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DEDICATION
To my beloved father, Harvey Nicholson, who was the first face of Alzheimer’s I saw. Caring for him inspired my passion for working with the elderly, especially dementia patients.
To my beloved mother, Ann Nicholson, who was the first face of Alzheimer’s caregiving I saw. Her constant devotion to my father throughout the progression of the disease inspired my appreciation for the love and commitment of caregivers.
ACKNOWLEDEGMENTS
Several people took the time to review the manuscript and share their valuable insights. Their input made this guide better, and for that I thank them. Any errors are mine alone.
Father Ed Morgan, Associate Rector of All Saints Anglican Church in San Antonio, who spent six years as a hospital chaplain in critical care areas where he worked with many Alzheimer’s patients.
David Bowles, author of The Westward Sagas series of historical novels, whose cherished brother suffered with Alzheimer’s.
Beverly Ellison, owner of Administrative Support Services, who has been caregiver for her mother with Alzheimer’s for six years.
PREFACE
This booklet began life as a school project. I had returned to college after a break of many years. During that break, I was one of the caregivers for my father, who had Alzheimer’s disease (AD). He was diagnosed about twenty years ago, when the disease wasn’t as well-known as it is now. Our family had never heard of Alzheimer’s and had no idea what to expect or what to do. We learned a great deal as we cared for Dad for the last seven years of his life. Some of our education came from reading and from talking to doctors. Most of it, however, came from trial and error.
Caring for my father impacted me so profoundly that I decided to make a career of working with the elderly. I have worked in several capacities and went on to earn a degree in social work. My personal experience of caring for a loved one with this disease has been the most useful source of information for caregivers.
When I was assigned a project in college to create an informational pamphlet, Alzheimer’s disease was the obvious topic for me. I wanted to help other families who were caring for loved ones with the disease. The project earned me an A and many compliments. My sister has encouraged me to make the information available to a wider audience, so now I have expanded the booklet to include more details as well as examples of how others have successfully handled specific situations.
Though the guide started as a class assignment, it has always been a labor of love. It is my hope that in these pages you find practical advice, encouragement, and hope.
INTRODUCTION
Alzheimer’s disease (AD) affects not only the person diagnosed with the disease, but his family and friends as well. This booklet is intended to help you, the caregiver, deal with some of the challenges this disease presents. I’ve listed some common areas in which you might encounter obstacles and offered suggestions on how to handle them. I’ve also included some examples of how caregivers have dealt with specific issues. The scenarios are based on actual experiences but are composites of several different individuals and situations.
Please remember that Alzheimer's affects each person differently. You may not encounter all of the obstacles I’ve listed, and you may be presented with some that I haven’t covered. Also keep in mind that different approaches work for different people. These tips come from my own experience, the experience of other caregivers, and ideas gathered from various resources, but you will have to find what works best for you and your loved one. Patience, humor, understanding, ingenuity, and flexibility are vital when caring for an Alzheimer's patient.
I have also included some tips on taking care of yourself. Caring for someone suffering from AD is a very demanding and stressful job. You cannot care for someone else if you do not first care for yourself.
There are many other aspects of caring for an Alzheimer’s patient—such as legal or medical matters—I haven’t covered. I did not include these because I wanted the focus of this booklet to be on the daily lives of AD patients and their caregivers. You may find the resources at the back of this booklet useful in getting the help you need with other important issues involved in caregiving. I hope the information and advice in this booklet will make your life just a little easier.
WHAT IS ALZHEIMER’S?
SIGNIFICANCE OF ALZHEIMER’S
Alzheimer's is a progressive neurological disease that affects over 5 million Americans, and this number is expected to increase as the baby boomers age. AD is the most common type of dementia. The only way to definitely diagnose AD is through an autopsy. Most doctors diagnose the disease by the process of elimination. They test for other causes of the symptoms, and if all of those are eliminated, they make the diagnosis of Alzheimer’s disease.
Alzheimer’s is a brain disease, a type of dementia, like breast cancer is a type of cancer. Since Alzheimer’s is a disease of the brain, it will impact all aspects of one’s life—memory, cognition, judgment, communication, vision, personality, comprehension, walking, and the ability to perform routine tasks. Ultimately, the disease is fatal.
Alzheimer’s affects not only the 5 million sufferers, but also their families and friends. Almost 11 million Americans spend billions of hours every year as unpaid caregivers for loved ones with AD. Caregiving can be stressful, time-consuming, and extremely difficult. This guide is designed to help make the task a little easier and less stressful.
SYMPTOMS OF ALZHEIMER’S
Early symptoms of AD may be subtle and explained away as normal forgetfulness. After my father was diagnosed, we realized that some of his previous actions were symptoms of the disease. On one occasion, he drove to town to pick up my two nephews and came home without them. When Mom asked where they were, Dad said he had forgotten what he went to town for. Another time, my father, who always wore a tie to church, asked my mother to help him because he couldn’t remember how to tie it. We thought Dad was forgetful, but we didn’t recognize these incidents as symptoms of a disease until after he was diagnosed with Alzheimer’s.
Memory Loss
AD patients first forget the latest things they’ve learned. They may forget a recent event or conversation yet remember in vivid detail their first day on their first job or their graduation from junior high. They may ask the same question repetitively because they don’t remember they’ve asked before.
They tend to forget things in the reverse order that they learned them. Engineers may retain engineering knowledge, even though it is very complicated. However, they may forget early in the disease how to send email since they learned that much later in life. This is known as retrogenesis. There is some disagreement as to whether it exists, but I have observed it over and over through the years. For example, I have seen many bilingual AD patients lose the ability to speak in their second language and revert back to their native tongue.
Music and singing seem to be retained more frequently than other abilities. Music and verbal skills use different parts of the brain—the part of the brain required for speaking may be badly affected, but the part of the brain used for music may still be alert. Often, someone with Alzheimer’s who has deteriorated to the point that they are nonverbal or speak only gibberish can sing along and remember all the words when they hear music, especially a favorite song or a cherished hymn.
People forget where they parked their cars at the mall and wonder if they have Alzheimer’s. Forgetting something like where you parked your car is normal forgetfulness. People with Alzheimer’s might find themselves at the mall, not know how they got there, and forget that they even have a car.
Changes in Cognition
AD patients are unable to learn new things—even if they are simple. What seems easy and natural to learn for most of us is complicated for the AD patient.
They can’t make logical connections—if faced with a situation that is slightly different from their past experience, they can’t figure out the similarities and adjust for the differences. For example, they can’t figure out how to turn on a new TV because the on/off button is in a different position on the remote control.
They can no longer handle money. They may get confused and not pay the electric bill, then not understand why the power is shut off. They may order items they don’t need from TV or Internet and not understand why the charges appear on their credit card statement. They can’t balance their checkbook and may overdraw their account and not have any idea of where the money went. They may even give away money or other valuables to strangers.
Confusion
AD patients become confused and overwhelmed easily. Too much information tends to bewilder them. Too much stimulation overwhelms them. Often, they can focus on only one topic or activity at a time. Trying to keep track of two or more things at once is more than they can handle. When they become tired, they are more easily confused and anxious.
They tend to get lost even in familiar neighborhoods. They may put things in strange places, such as the car keys in the refrigerator, because they are confused.
Routine is very important to someone with Alzheimer’s. Changes in schedule and surroundings and being in strange situations or around unfamiliar people can be very stressful. They may want everything in a specific place or tasks performed in a particular order.
In the early stages, they may need a reminder to do something, such as dress. As the disease progresses, they will need more instructions on how to complete the task, such as "Put on your shirt and your pants." In the later stages of the disease, you may need to tell them the first step and not move on to the next step until they have completed step one. Eventually, they will be unable to perform the task at all and will depend on you to do it for them.
Changes in Communication
Alzheimer’s patients have problems in communicating—both in expressing themselves and in understanding what is said to them.
When speaking, they may lose their train of thought or have difficulty knowing the right word. What they say isn’t necessarily what they mean.
They may not understand what is being said and consequently may answer inappropriately. If you have to repeat something they don’t understand, they get confused if you say the same thing in different words. They think you are saying something totally different because their brain is still trying to process what you said originally.
Body language is very important. They may not be able to understand your words, but they recognize and respond to your tone of voice, position, and demeanor. If you get too close to them, lean over them, and speak loudly, they will probably become very agitated, regardless of what you say. On the other hand, if you smile, get at their level, and speak softly, they will probably respond positively, even if they don’t understand your words.
Personality Changes
Often Alzheimer’s patients become more childlike and innocent. They usually become more emotional, with emotions ranging from crying to anger to suspicion.
They lose their inhibitions, which can have both good and bad consequences. They may be willing to try things that they would never have done before. The introvert may come out of his shell. This often brings them great enjoyment.
***
Dad was always friendly and pleasant, but he tended to be a homebody and didn’t like to draw attention to himself. My sister, a business owner, signed up for a seminar at sea. She could take guests for the cruise, and she invited me to go with her. When I told my parents about the upcoming trip, Dad asked, "Why didn’t she invite us?" It had never occurred to either of us that Mom and Dad would want to go, but we were both glad to have them join us.
On the second day of the cruise, my folks said they were going to walk around the deck while my sister attended a seminar session and I went to a show. When we met up later for lunch, Mom announced, "Your father won the men’s knobby knee contest." My sister and I looked at each other, then from my mother to my father. Dad had the cute little grin that we all loved. My sister and I thought Mom was joking, but they both assured us it was true.
Mom had become overtired when they were walking, and they looked for the first place they could find to sit down. The room they entered turned out to be an auditorium. A lady came up to Dad and invited him to enter the knobby knee contest. Dad went up on stage and let a bunch of strange ladies feel his knobby knees. He got a kick out of being declared the winner and being handed a little plastic trophy.
Later, after Dad’s diagnosis, we realized he had been in the very early stage of AD and had lost his inhibitions. He had a good time being the center of attention, something he ordinarily avoided, and Mom, my sister, and I enjoyed his pleasure. My sister still has the little plastic trophy as a reminder of that fun vacation.
***
The loss of inhibitions can be positive, but on the other hand, patients may exhibit inappropriate behaviors or become very angry and verbally and/or physically aggressive.
They may become very needy and follow you everywhere. They want you with them all the time and become anxious if you are out of their sight. This may be because they are afraid of making a mistake or getting lost, and they feel safe with you.
It is very common for there to be a complete personality change. The father who wielded a heavy hand with his kids may become a sweet, gentle teddy bear. On the other hand, a prim and proper churchgoing mom may become angry, cold, and as foul-mouthed as any sailor. The personality change is often the most difficult for families to deal with and often causes the most chaos, pain, and embarrassment for them.
Changes in Social Interactions
One of the early symptoms of Alzheimer’s is withdrawal from social activities. They may quit going to church or the civic club or stop socializing with friends and extended family. At this point, the AD patient recognizes that something is wrong and wants to avoid situations in which others will recognize the change. Loved ones may not yet notice other symptoms of AD and wonder why the individual is refusing to participate in normal activities.
Through the progression of the disease, relationships with loved ones change. The once-strong and independent father becomes the child. The man who was the head of the family has to depend on his wife to make simple decisions. The mother who taught her children by example has to be told to get dressed in the morning. Family members and friends often find the changes in the relationship hard to handle.
Many AD patients lose the ability to empathize with other people. They become so focused on their own needs that they seem to be selfish and uncaring about those around them. They are more concerned about their minor problems than about serious problems of their loved ones. They may sometimes be very loving and thoughtful when it does not inconvenience them. However, when they want something, they ignore the illness or injury of their caregivers and want the caregivers to respond to their wishes immediately. They act as if the world revolves around them.
Sometimes people with Alzheimer’s remember things that happened in the past and forget everything since then. There may have been an estrangement from another family member that was later healed or an argument that was later resolved. The AD patient may forget the forgiveness and reconciliation and refuse to have anything to do with the other person, thinking they are still estranged.
Alzheimer’s is a very isolating disease, both for the person who has it and for the family. AD affects the family in a different way from other serious diseases. While loved ones of someone who suffers with cancer or who has had a stroke are certainly greatly affected by the disease, the family of a person with AD has a more difficult time accepting help from others. The confusion, fear, anger, emotions, and behaviors of the Alzheimer’s patient make it almost impossible for those unfamiliar with the disease to help.
Not only are the behaviors of the patient hard to deal with, but also until the very late stages, Alzheimer’s patients don’t look sick. People who don’t know anything about the disease may think that the patients aren’t ill but simply being difficult.
***
Rita had never been a regular churchgoer, but she attended special services such as Easter and Christmas with her husband, Herb. Herb, on the other hand, rarely missed a service and served on numerous committees at church. Once Rita was diagnosed with Alzheimer’s, Herb was unable to attend church on a regular basis. He never knew what Rita would do if left home alone. She might go for a walk and get lost or put something on the stove and forget about it.