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Alzheimer’s disease: Joy through understanding

A discussion of why we need to understand a person with Alzheimer's in order to focus conversations on long-term memories that still exist.
© Jolene A. Brackey

Understanding the Person

Think of something from your childhood that makes you feel good just thinking about it: a wooden swing hanging from a tree, Grandma baking bread in the kitchen, fresh strawberries picked from the garden, a new dress, or a baseball game with the neighborhood kids. Would you have thought of that memory right this minute had I not asked you to? Not likely. It takes someone or something else to trigger moments in our memory.
My next question is. . . Are you thinking about the whole day or are you thinking about the moment? The moment. Our memory is made up of moments. People with dementia have these moments in their memory just like you and I, but they can’t pull a moment out of the darkness. Not until they see a swing, smell the bread, taste a strawberry, or feel a baseball glove will the memory be triggered.
Before we can create moments of joy, we need to understand the person with Alzheimer’s . . . understand that they lose their short-term memory. How do we know they lose their short-term memory? They repeat the same question over and over and over again. And if you ask them, “What did you have for breakfast?” they will answer something like, “I don’t know. I didn’t get any.” What if you ask them about the family reunion they went to last weekend? Their response will likely be, “What family reunion? I haven’t seen my family in months.”
Even though they lose their short-term memory, they can retain long-term memory as the disease progresses. Whose responsibility is it to chat about their long term memories instead of their short-term mem­ories? Ours. Instead of asking, “What did you have for breakfast?” or “Did you have a good visit with your son last night?” chat about the memories that are ingrained in them: “You love bacon and eggs.” “Your son has big brown eyes, just like you.”
One of my joys is walking in the rain. I was out walking in the rain one night and decided to stop by the nursing home to create a moment of joy. A lady came up to me and said, “Honey you are so wet, can I get you a towel?” I responded, “I love walking in the rain. I am a water girl, and a really good swimmer.” She piped back, “I’m a good swimmer! When I was eight years old there was two kids in the river and they didn’t look like they were going to make it. I jumped in, grabbed the girl by the hair, told that boy he better hang on, and I swam. I could not touch the bottom. But then I did touch the bottom and pushed those kids to shore.” I gasped, ”You saved their lives?!?” She answered, “Honey, all I know is I was shaking and I didn’t swim for two years.”
How many times do you think I heard that story in the fifteen minutes we were chatting? At least five. What triggered her story? My hair was wet. You too will hear from someone a story over and over again. You have a choice … “Ugh, if I have to hear that story one more time!” Or you can think, “I’d better remember this story for this person.” Because as the disease progresses she will lose the ability to communicate her story. When that happens, what do you think will create joy for her? Us telling her her story.
I wish I could hear the story my mom told me over and over. It is the very thing I miss now that she is no longer living. — A daughter
That story that irritates you may be the very thing that creates joy. In fact, two months later while I was visiting that community I walked up to that lady and said, “Have you been swimming lately?” She answered, “No, but when I was eight years old there was two kids in the river and they didn’t look like they were going to make it …” She told me the whole story all over again. What did I have to say to trigger her story? Swimming. Imagine if everyone knew to use the word swimming with this lady — if every visitor, every caregiver went up to her and said, “Hey, have you been swimming lately?” Then she would get to tell her story over and over. Would she have a better day? Absolutely! Because telling her story leaves her with a good feeling. A good feeling about saving those kids.
This next part is a little more confusing: As the disease progresses, they get younger in their mind. In other words, they lose more and more short-term memory. We know this because who do they ask for? Their parents, who are deceased, their spouse, their kids. But when her husband is in the room she is thinking, “Ew, I will be nice to that man for about ten minutes but then he has to go.” She is looking for her young, hand­some beau. Or they will wonder, “Where are my kids?” But when their kids come to visit they do not recognize them because they are looking for their little kids.
Figure out what age they are living in their mind because this is where their memories are. If she is constantly looking for her mom, how old do you think she is at this moment? Probably adolescent. If she’s con­stantly looking for her husband but doesn’t recognize him, she is in her twenties or thirties. If she is constantly looking for her kids but doesn’t recognize them, what age are her kids in her mind? Four? Seven?
Our whole goal is to help them feel like whoever they’re looking for is perfectly okay in this moment. If they’re looking for their mom, how do we make them feel like their mom is okay? Where would their mom be? At home? But if you say their mom is at home, then you trigger them to want to go home. Take the word “home” out of your vocabulary. It’s better to say, “Your mom will be right back,” or “Your mom is in the kitchen.” Where would her husband be? At work? In the field? Fishing?
People think this is lying because: “Their mom is no longer living. She is not in the kitchen.” “Their husband is no longer living. He is not in the field.” Go ahead, give it your best shot and tell the person your truth. Tell the person their husband is no longer living. How does that make them feel in this moment? Confused, distraught, anxious, and alone. How do they function when they feel these emotions? Consider they can’t function. Who suffers the repercussions when they feel angry, sad, alone, scared? We do. Do they change when you tell them their husband is no longer living? Do they say, “Oh yeah, that’s right,” and never ask you the question again? No. They cannot change. This is a disease. They are doing the best that they can with the memories they have left. They are not asking these questions just to irritate you. Who is the only one who can change? You are.
It was obvious a caregiver didn’t live Evelyn’s truth because she came into my office upset because her mom had died, her husband had died, and she couldn’t get to their funerals, both of which she thought were being held in this building. We walked for a bit and chatted. I knew she was Christian, so we went back to my office, sang hymns, and prayed. When she left she told me how much she enjoyed church and that she hadn’t been to a church service in such a long time. These simple moments brought her to a peaceful place. —Raeleen Boykin
While I was visiting a community, a lady in distress asked me, “Have you seen my sister?” I responded as I normally do: “Yes, I have. She said she’s looking forward to visiting you.” She replied, “Oh thank God … because that lady over there said she was dead. I need to sit down. I am not feeling so well.”
People will have literal pain because of the answers we give them. Live in their truth. Make them feel that whomever they are looking for is perfectly okay right now. Remember. . . short-term memory loss: you get to keep changing your answer until you find the one that works.
Families also tend to focus on who this person was in the recent past. Dad was a businessman. Dad was a board member. Dad was an accountant. But when we meet him, all he wants is Betsy. “Betsy! Betsy! Betsy!” Who could Betsy be, based on what his kids have told us? His wife? His secretary? His child? Betsy could be just about anybody. Who has to figure out who Betsy is? We do. Because how many times does he look for her throughout day? Over and over.
We think Betsy is his wife, and we say to him, “She is uptown getting her hair done.” Then he looks like, “Liar, crazy woman!” Can you not tell when you give someone the wrong answer? They look at you like, “Where did you fall from?” Because … for this person, Betsy was his cow. “Betsy’s uptown getting her hair done?!?” What?!? This is the only disease where you get to keep changing your answer every thirty seconds until you find the one that works.
When you finally figure out Betsy is the cow, can you say to him, “You don’t have a cow. You are eighty-two years old”? No, because now he will be worried about the cow. Where would Betsy be to be perfectly okay? “She’s in the barn,” “She’s out in the back forty,” or “I just milked her.” Again, your whole goal is to make them feel like whoever they want or whatever they are looking for is perfectly okay in this moment. How old is he in his mind if he is looking for Betsy? Maybe fifteen or sixteen. If he is fifteen in his mind, whose responsibility is it to chat about his siblings and grandparents instead of the grandkids that visited yesterday? Ours.
Let’s say that in their mind they are in their twenties, and at that time they lived in Missouri, but now they live in Arizona. In this moment where do they believe they are living? Missouri. Who has to Google their hometown in Missouri or get a map of Missouri? We do.
They may even revert back to their native language. If the person lived in Germany until he was fifteen, he may start speaking German again, which means you may have to learn a few German words. If you sing a simple song such as Happy Birthday, the ABCs, or the 1-2-3s, it may trigger the person to speak English again.
At some point they will no longer recognize themselves, so when they talk to the mirror they are really talking to someone else. That person in the mirror is much older than they are. Talking to a mirror may have a negative effect because the person in the mirror doesn’t talk back or looks ill. If that’s the case, remove the mirror. But if they are having a lovely conversation with the person in the mirror, let it go.
Once we realize what age they are living in their mind at this moment, then we will be more likely to connect with them and possi­bly find out things we never knew before. (Note: The age at which they think they are living shifts throughout the day. In the morning they may be more lucid, but in the evening they may be looking for their mom. Having this understanding is like having a window into a person’s mind. And we are here to bring light into that window.)
People ask me, “How do I know if I have found the right answer?” Just look at the person’s face. It will tell you everything. And if it works, it works. Don’t question it, no matter how bizarre the answer seems to you. Your goal is to create a better reaction. You’re not shooting for a perfect reaction, just a better reaction. When you find the answer that works to the question they ask fifty times a day, tell everyone!!! It is a treasure that will surely create a better day.
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
© Jolene A. Brackey
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Creating Moments of Joy for People with Alzheimer’s

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