July 8, 2008 -- 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 willlose his short-term memory, but retain somelong-term memory if we learn how to triggerit. The first part of the brain that is damaged affectsthe short-term memory. This is why they repeat theirstories, why they cannot remember what they hadfor breakfast or that their son visited last night. Whenyou ask them what they had for breakfast they say, "Ididn't have breakfast. Would you make me some?"Switch to their long-term memory and ask what theylike to eat for breakfast, cereal or pancakes? They canchat about what they like to eat, but they cannot chatabout what they just ate.
When you say to them, "I heard your son cameto 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 sucha wonderful kid, and he has big brown eyes just likeyou. You must be a proud mama." We can give her herson back . . . not from last night, but we can remind herwho he is.
During a discussion about pets, Tom piped up about hispet mule. He said, "I had a pet mule once named Topsie.The only way to get Topsie to work for me was to sharemy tobacco with him." I asked him how old he was, andhe said, "I was about 15 or 16." Tom is 82 years old,and doesn't remember what he had for breakfast, but hestill remembers details from his childhood. He not onlyremembered 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 theywill share the same story over and over again. Thefollowing story is a true example of this.
I love to walk in the rain. As I was walking by the carecenter I thought, "I am going to go in and create amoment of joy." It never fails, the people there alwayscreate one for me. My hair was soaked and the ladieswanted to get me a towel. I explained how I loved thewater. I am a lifeguard; I love to swim and walk in therain. One of the ladies told me how she was a goodswimmer, too, and taught all of her children to swim.She also told me about when she was eight and therewere two kids in the river. They weren't very old anddidn't look like they were going to make it. So she swamout and grabbed the girl by the hair and told the boyhe better hang on. She wasn't very big and about thetime when she didn't know if she would make it, shetouched bottom and pushed the kids to shore with all herstrength. I said, "Wow, you saved their lives." She said,"All I know is, I was shaking and I didn't swim for twoyears after that."
Now guess how many times I heard that story inthe 15 minutes I visited with her....five times. My wetunderstanding the person with Alzheimer'shair triggered her story over and over again. Now,you can look at the stories they repeat over and overand over again and think, "Ahh, I already heard thatstory 10 times." Or you can look at that story andthink, "I better remember this story for her becauseher disease might progress and she might lose theability to tell me her story." When that time comes,the story that may put a smile on their face is the onethat irritated you. These things that irritate you todaymight become treasures tomorrow.
— David Dodson Gray
As the Disease Progresses, Age Regresses
As the disease progresses, a person withAlzheimer's gets younger and younger and youngerin his mind. In other words, early in the disease theymay have only lost the last 20 years, but as the diseaseprogresses they may lose the last 40 years, the last 60years, and so on. This is why they don't recognizetheir spouses, because in their mind, they think they creating moments of joyare 25 and their spouses are too old because they havegrey hair. They also may ask where their moms are, orget up and want to go to school.
If they begin talking to the mirror, they arereally talking to another person because they don'trecognize themselves. That person in the mirror ismuch older than they are. Talking to a mirror usuallyhas a negative effect because the person in the mirrordoesn't talk back or may look ill. If they are havingnegative reactions, then remove the mirror. But if theyare having a lovely conversation with the person inthe mirror, it is a good thing. Pay close attention totheir facial expressions. They will tell all.
People with Alzheimer's even revert back to theirnative language. If a person lived in Germany until shewas 15, she might start talking German again. If youno longer understand what she is saying, determine ifshe is talking in her native tongue. Then try to learnsome words in her native language.
How do you figure out what age they are living?The simplest way is to ask them, "How old areyou?" If they do not respond or show confusionanswering this question, there are other ways to figureit out. If a man is looking for his spouse, but does notrecognize her, you can assume he remembers they aremarried—which is usually between the age of 20 to40. If a woman is looking for her children and does notrecognize them, you can assume they are in youngeradulthood—perhaps twenties or thirties. If they arelooking for their parents, you can assume they are inadolescence. Once you figure out what age they areliving, then figure out what was significant in their lifeat that time. Use that information to create momentsof joy.
I heard a story about a gentleman who angrily walkedaround yelling, "Horse! Horse!" Staff labeled him asagitated and usually avoided him because his yellingwas so annoying. They eventually decided to talk to thefamily about this "behavior." The family replied thatwhen he was in his 20s, he took care of horses. With thisunderstanding, they brought in a saddle, reins, cleaningsupplies and pictures of horses and filled his room withitems familiar to him. His yelling diminished, and hewould clean the saddle and reins for long periods oftime.
It's exciting!! Once we understand why these greatpeople we care for do what they do, then we acceptthe challenges with a positive outlook. We now haveenergy to find a solution instead of dwelling on theproblem. Behaviors, or more positively called actionsand reactions are windows to a person's mind, and wecan help bring light to that window.
Our value lies in what we are and what we have been, notin our ability to recite the recent past.
— Homer, a man with Alzheimer's diseaseNewfound Understanding20
Letting Goof Expectations
In the middle stages of Alzheimer's, theirdevelopmental level is eight years old. As thedisease progresses, their development level is fiveor younger. In the late stages of Alzheimer's, theirdevelopmental level is three or younger. If you havegrandchildren or children three or younger, watchwhat they are able to do and a person with Alzheimer'scan probably do it, too. As the disease progresses theirdevelopment regresses in almost the same way as aninfant grows.
The same pattern applies for inhibitions. While achild has not yet formed inhibitions, the adult withdementia loses his inhibitions. For example, when a childhas a thought, does he stop and think, "I shouldn't saythat"? No, children say exactly what they are thinking.The same is true for people with dementia. Ibelieve that is why swearing is so prevalent. It is notthat they don't understand those words; it is just thatthey have lost the ability to filter their thoughts beforethey speak. If a person with dementia is thinkingsomething, it is going to come right out of theirmouth.
What's one of the first words a child says? No.What is one of the last words a person with dementiacan say? No. And, just like a toddler, communicationcan be expressed with body language and outwardemotions (cries, tantrums, hitting) instead ofverbal communication. When someone is unableto communicate with words, the next defense isphysical.
Now think about clothing and how that correspondsto a child's developmental stage. At what age doesyour child want to wear the same outfit everyday? Ihave 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 layersof clothes, and think they are cute just because theydressed themselves? Around three. At what age doesyour child love to be naked? Three and younger. This isthe same progression for someone with Alzheimer's.First they will regress to wearing the same outfitseven days a week. Then they will regress to wearinga bra over their shirt, clothes that don't fit, layers uponlayers, but they dress themselves. Then they will walkcompletely naked into the middle of a living roomfilled 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 wouldshovel sand into his mouth like it was candy. I thought ofDowell, another person who taught me many lessons. Inthe late stages of his dementia, Dowell would eat flowersand dirt. Instead of correcting him, I wish I could haveunderstood that this was his developmental level and Ishould have replaced the dirt with a graham cracker.When my daughter was 3, she asked if she could helpme clear the tables. I was thinking, "No Way!" Shemight break my dishes. She wouldn't know where to putthem. But then a light bulb went on! She could sort mysilverware. Then I thought, people with dementia couldsort silverware, too. Sure enough, another purposefulactivity had been created.
A person with dementia needs structure and routine,as children do. What if you took your child to preschooland they didn't have any structure? Basically theycould run around and do what they wanted to all day.What would their emotions be like when you pickedthem up? Some kids would be crying, some kids wouldbe fighting, some kids would be scared, some kidswould be clinging to the adults, some kids probablywould wander off or other kids would say, "I want togo home."
Does this remind you of any other environment?Yes. It's like a memory care community that doesn'thave a program to keep people busy. When a child isnot busy, what do they get into? Trouble. When a childdoesn't get a nap, how are they at the end of the day?Cranky, confused, unreasonable. When a person withdementia doesn't get enough rest, how are they?We need to let go of our expectations, andunderstand this is their development level. People withdementia are not purposely trying to make us mad,they are doing the best they can with the abilities theyhave left.
People who have dementia need to have structureand 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.