Dealing with Alzheimer's disease can be as difficult for family members as it is for the afflicted patient. Author Jolene Brackey has written a book to help families handle the changes Alzheimer's brings.
"Creating Moments of Joy" focuses on looking beyond the disease's challenges. Instead, it says people should focus more energy on making joyful moments, since a person with short-term memory loss lives from moment to moment.
Click here to link to Brackey's Web site and read an excerpt of the book below.
Understanding the Person with Alzheimer's
Understand that a person with Alzheimer's will lose his short-term memory, but retain some long-term memory if we learn how to trigger it. The first part of the brain that is damaged affects the short-term memory. This is why they repeat their stories, why they cannot remember what they had for breakfast or that their son visited last night. When you ask them what they had for breakfast they say, "I didn't have breakfast. Would you make me some?" Switch to their long-term memory and ask what they like to eat for breakfast, cereal or pancakes? They can chat about what they like to eat, but they cannot chat about what they just ate.
When you say to them, "I heard your son came to visit you last night," the response goes like this, "I haven't seen him in months. Where is my son?" Again, switch to their long-term memory, "He is such a wonderful kid, and he has big brown eyes just like you. You must be a proud mama." We can give her her son back . . . not from last night, but we can remind her who he is.
During a discussion about pets, Tom piped up about his pet mule. He said, "I had a pet mule once named Topsie. The only way to get Topsie to work for me was to share my tobacco with him." I asked him how old he was, and he said, "I was about 15 or 16." Tom is 82 years old, and doesn't remember what he had for breakfast, but he still remembers details from his childhood. He not only remembered how old he was and the name of his mule, but he remembered how to get Topsie to work for him. That's a treasure!
Because of their short-term memory loss they will share the same story over and over again. The following story is a true example of this.
I love to walk in the rain. As I was walking by the care center I thought, "I am going to go in and create a moment of joy." It never fails, the people there always create one for me. My hair was soaked and the ladies wanted to get me a towel. I explained how I loved the water. I am a lifeguard; I love to swim and walk in the rain. One of the ladies told me how she was a good swimmer, too, and taught all of her children to swim. She also told me about when she was eight and there were two kids in the river. They weren't very old and didn't look like they were going to make it. So she swam out and grabbed the girl by the hair and told the boy he better hang on. She wasn't very big and about the time when she didn't know if she would make it, she touched bottom and pushed the kids to shore with all her strength. I said, "Wow, you saved their lives." She said, "All I know is, I was shaking and I didn't swim for two years after that."
Now guess how many times I heard that story in the 15 minutes I visited with her....five times. My wet understanding the person with Alzheimer's hair triggered her story over and over again. Now, you can look at the stories they repeat over and over and over again and think, "Ahh, I already heard that story 10 times." Or you can look at that story and think, "I better remember this story for her because her disease might progress and she might lose the ability to tell me her story." When that time comes, the story that may put a smile on their face is the one that irritated you. These things that irritate you today might become treasures tomorrow.
Two months later, I visited this lady again and just said, "Hey, ya been swimming lately?" She replied, "No, but when I was eight...." And she proceeded to tell me the whole story again. All I had to say was the word "swimming." At that point I wished everyone knew the word "swimming," and I wished people would come up to her all day long and ask, "Hey, ya been swimming lately?" Then she would get to tell her story over and over and over again. Do you not think she would get a better day? Absolutely! Because the story leaves her with a good feeling.
Everything is in the process of being forgotten. But who we are—who we have been in mood, in personality, in character—persists much longer
— David Dodson Gray
As the Disease Progresses, Age Regresses
As the disease progresses, a person with Alzheimer's gets younger and younger and younger in his mind. In other words, early in the disease they may have only lost the last 20 years, but as the disease progresses they may lose the last 40 years, the last 60 years, and so on. This is why they don't recognize their spouses, because in their mind, they think they creating moments of joy are 25 and their spouses are too old because they have grey hair. They also may ask where their moms are, or get up and want to go to school.
If they begin talking to the mirror, they are really talking to another person because they don't recognize themselves. That person in the mirror is much older than they are. Talking to a mirror usually has a negative effect because the person in the mirror doesn't talk back or may look ill. If they are having negative reactions, then remove the mirror. But if they are having a lovely conversation with the person in the mirror, it is a good thing. Pay close attention to their facial expressions. They will tell all.
People with Alzheimer's even revert back to their native language. If a person lived in Germany until she was 15, she might start talking German again. If you no longer understand what she is saying, determine if she is talking in her native tongue. Then try to learn some words in her native language.
How do you figure out what age they are living? The simplest way is to ask them, "How old are you?" If they do not respond or show confusion answering this question, there are other ways to figure it out. If a man is looking for his spouse, but does not recognize her, you can assume he remembers they are married—which is usually between the age of 20 to 40. If a woman is looking for her children and does not recognize them, you can assume they are in younger adulthood—perhaps twenties or thirties. If they are looking for their parents, you can assume they are in adolescence. Once you figure out what age they are living, then figure out what was significant in their life at that time. Use that information to create moments of joy.
I heard a story about a gentleman who angrily walked around yelling, "Horse! Horse!" Staff labeled him as agitated and usually avoided him because his yelling was so annoying. They eventually decided to talk to the family about this "behavior." The family replied that when he was in his 20s, he took care of horses. With this understanding, they brought in a saddle, reins, cleaning supplies and pictures of horses and filled his room with items familiar to him. His yelling diminished, and he would clean the saddle and reins for long periods of time.
It's exciting!! Once we understand why these great people we care for do what they do, then we accept the challenges with a positive outlook. We now have energy to find a solution instead of dwelling on the problem. Behaviors, or more positively called actions and reactions are windows to a person's mind, and we can help bring light to that window.
Our value lies in what we are and what we have been, not
in our ability to recite the recent past.
— Homer, a man with Alzheimer's disease Newfound Understanding 20
Letting Goof Expectations
In the middle stages of Alzheimer's, their developmental level is eight years old. As the disease progresses, their development level is five or younger. In the late stages of Alzheimer's, their developmental level is three or younger. If you have grandchildren or children three or younger, watch what they are able to do and a person with Alzheimer's can probably do it, too. As the disease progresses their development regresses in almost the same way as an infant grows.
The same pattern applies for inhibitions. While a child has not yet formed inhibitions, the adult with dementia loses his inhibitions. For example, when a child has a thought, does he stop and think, "I shouldn't say that"? No, children say exactly what they are thinking. The same is true for people with dementia. I believe that is why swearing is so prevalent. It is not that they don't understand those words; it is just that they have lost the ability to filter their thoughts before they speak. If a person with dementia is thinking something, it is going to come right out of their mouth.
What's one of the first words a child says? No. What is one of the last words a person with dementia can say? No. And, just like a toddler, communication can be expressed with body language and outward emotions (cries, tantrums, hitting) instead of verbal communication. When someone is unable to communicate with words, the next defense is physical.
Now think about clothing and how that corresponds to a child's developmental stage. At what age does your child want to wear the same outfit everyday? I have three children and I know the age is four to six. At what age does your child wear clothes inside out, only underwear, purple with green, layers and layers of clothes, and think they are cute just because they dressed themselves? Around three. At what age does your child love to be naked? Three and younger. This is the same progression for someone with Alzheimer's. First they will regress to wearing the same outfit seven days a week. Then they will regress to wearing a bra over their shirt, clothes that don't fit, layers upon layers, but they dress themselves. Then they will walk completely naked into the middle of a living room filled with people and think they are perfectly fine. They lose their inhibitions as the disease progresses, just as a child gains his inhibitions as he matures.
When my son was 1 and playing in the sand pile, he would shovel sand into his mouth like it was candy. I thought of Dowell, another person who taught me many lessons. In the late stages of his dementia, Dowell would eat flowers and dirt. Instead of correcting him, I wish I could have understood that this was his developmental level and I should have replaced the dirt with a graham cracker. When my daughter was 3, she asked if she could help me clear the tables. I was thinking, "No Way!" She might break my dishes. She wouldn't know where to put them. But then a light bulb went on! She could sort my silverware. Then I thought, people with dementia could sort silverware, too. Sure enough, another purposeful activity had been created.
In the late stages of dementia, some people put everything in their mouths. If you put lotion in a lady's hands, she might try to lick it off her hands. Too often, we make the conclusion this person cannot have lotion anymore. I disagree. We should still give her lotion but we need to take the next step and rub it in for her. With this awareness of the challenges that occur in each developmental level, I celebrate because it helps me understand a person with Alzheimer's. There is definitely a difference, though, in the language and tone of voice (high pitch) we use for babies compared to the language and tone of voice (low pitch) we use for older people. This also does not mean we treat older people like children. This means we understand and accept the capabilities of a person with Alzheimer's.
A person with dementia needs structure and routine, as children do. What if you took your child to preschool and they didn't have any structure? Basically they could run around and do what they wanted to all day. What would their emotions be like when you picked them up? Some kids would be crying, some kids would be fighting, some kids would be scared, some kids would be clinging to the adults, some kids probably would wander off or other kids would say, "I want to go home."
Does this remind you of any other environment? Yes. It's like a memory care community that doesn't have a program to keep people busy. When a child is not busy, what do they get into? Trouble. When a child doesn't get a nap, how are they at the end of the day? Cranky, confused, unreasonable. When a person with dementia doesn't get enough rest, how are they? We need to let go of our expectations, and understand this is their development level. People with dementia are not purposely trying to make us mad, they are doing the best they can with the abilities they have left.
People who have dementia need to have structure
and routine every day, in order to get a better day.
—Jolene "Let Go" To "let go" does not mean to stop caring;
it means I can't do it for someone else.
To "let go" is not to cut myself off;
it's the realization that I can't control another.
To "let go" is to admit powerlessness,
which means the outcome is not in my hands.
To "let go" is not to try to change or blame another;
it's to make the most of myself.
To "let go" is not to "care for," but to "care about."
To "let go" is not to judge,
but to allow another to be a human being.
To "let go" is not to deny, but to accept.
To "let go" is not to nag, scold, or argue, but instead to
search out my own shortcomings and correct them.
To "let go" is not to regret the past, but to grow and live
for the future.
To "let go" is to fear less and love more.