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People with Alzheimer’s: Living in their Reality

Jolene discusses why moments of joy can only be found in the reality that exists for the person with Alzheimer's.
© Jolene A. Brackey
The following reading is from Jolene Brackey’s book: Creating Moments of Joy. In this piece, titled “Live Their Truth,” we explore why living in their reality is so important for creating moments of joy.

Live Their Truth

You were taught not to lie to your parents under normal circum­stances, but these are not normal circumstances. This is a disease that has made this time (younger) in their life their truth. They cannot change their truth no matter how many times you correct them. All you have is this moment. What is the most loving thing to do in this moment? Make them feel better: “Mom will be right back.” Or make them feel worse: “Your mom is no longer living.” Keep changing your answer until you find the one that makes this person feel like every­thing is perfectly okay.
“Where is my mom?”
“Your mom’s in the garden.”
“Your mom’s making dinner.”
“Your mom’s visiting her sister.”
“Your mom will be right back.”
You might think their mom would be at work or shopping. But in their generation mothers didn’t usually go to work or go shop­ping. When our generation gets dementia, our moms will be working and shopping.
We tried everything, but nothing worked for this lady. Finally we asked her son where his mom’s mom would be during the day. He explained that his mom grew up in a boarding school and her mom would visit on the weekend. We found a treasure: “Your mom is coming to see you this weekend.”
“Where are my children?”
“Your baby is sleeping.”
“Your kids are in school.”
“Sue is taking a nap.”
“Tom is doing his chores.”
If she thinks her kids are older:
Sarah would ask fifty times a day, “Where are my children?” Now we knew Sarah had a strong work ethic, so the answer that usually worked was, “Ted is working downtown, and Shirley will pick you up at 5:00 p.m.” Ted actu­ally did work downtown, and if Sarah had a good morning she would be okay with Shirley picking her up at 5:00. If she wasn’t having a good day, she would usually respond, “I raised and took care of those kids; they better take care of me. I am not staying here until 5:00.” Because of her short-term memory loss she would come around the corner within thirty seconds and ask the same question to the same person. If she was upset, we knew we needed to change our response. “Ted is at work, and Shirley just called and said she is picking you up at 10:00 this morning.” Then at 10:00 we would say, “Shirley is picking you up at 12:00”; at 12:00, “She is picking you up at 4:00”; at 4:00, “She is picking you up after supper”; after supper, “She is picking you up at 8:00”; at 8:00, “She is picking you up in the morning.” By now, you probably realize Shirley isn’t going to pick her up. Shirley isn’t picking her up until Tuesday to take her out for lunch, but that answer, to say the least, upset Sarah. Sarah was okay with staying a little longer, but she wasn’t going to stay here until Tuesday!
“Where is my wife?”
“Alice is at church.”
“Alice is getting her hair done.”
“Alice is playing bridge.”
“Your wife will be here soon.”
The reason many of your answers do not work is because you say: “He’s uptown,” “She’s outside.” The person with dementia doesn’t know who you are talking about when you say he, she, they, or it. Saying a per­son’s first name triggers a response.
My husband has Alzheimer’s. We used to routinely do dishes together after every meal. When I say, “I need your help with the dishes,” my husband doesn’t get up. But when I say, “Sharon needs your help with the dishes,” my husband will get up and help me. —Sharon
“Where is my husband?”
“Joe is at work.”
“Joe is uptown with Fred.”
“Joe is out in the field.”
“Joe is at the hardware store.”
“Joe went to get the paper.”
If you say, “Joe is at church,” and she gives you a look like, “Liar,” when she comes around the corner again asking for her husband you might want to change your answer. “Joe is at the bar.” She might be ticked off because he is at the bar again but it is the answer she believes, so being ticked off is a normal reaction. Now become her girlfriend and let her vent about what a big jerk he is.
“I have to go to work.”
“It’s Saturday.” (Not knowing what day it is becomes a blessing, because it can be Saturday every single day of the week. P.S., “It’s Saturday” won’t work for a farmer.)
“It’s a holiday.”
“The boss called and won’t be in. He said to take the day off.”
“The road is out.” (Even if they fix the road going into town, the road is forever out.)
“There’s a bad storm coming.”
“I need to go to school.”
“They canceled school.”
“It’s summer vacation.”
“Okay, let’s get dressed.”
If you hesitate they won’t believe the answer that comes out of your mouth. Ninety percent of what they understand is not the words you use but how you say it and your facial expression.
Keep answers short and simple. When the person is losing their ability to communicate, they can’t understand if your answer goes into two or more sentences, you will lose ’em.
“Chuck did the chores.”
“I just milked Bessie.”
“Judy is taking care of your cat.”
“Bill is checking on your home.”
“All your bills are paid.” (Give them a statement: “paid in full.”)
“Your son John needed to borrow the car.”
Every person is different, so some of these answers will work and some won’t. When you find the answer that works, tell everyone! Keep a notebook with some blank pages so when someone finds something that works, they too can write it down for everyone to use.
It was time to get Dad ready for respite care, which was always a challenge. Dad was comfortable in his bed and I told him that I was getting dressed for a meeting at the church and he could go with me. Trying not to tell him what to do, I told him I was leaving in an hour. To my surprise he got up and got dressed. I noticed Dad was putting on his nicest gray suit with a perfectly starched white shirt. And he was tying his red tie like he had done for thirty years as a successful banker. Before today I would have asked him why he was wearing a suit and where he thought we were going. Today I tried a different approach. I told him they just called to say we shouldn’t wear a coat and tie today and I wasn’t going to wear one either. Having heard me say the word “church,” he asked why we wouldn’t wear a suit to a wedding. I paused and thought again. I told Dad that “the wedding” wasn’t until tomorrow and we were just going to the church for a meeting. He slowly took off his coat and tie and we walked out the door. He was still the best-dressed man at respite care that day, as always. —Chuck Hughes, pilot and son
Being loving to a person sometimes means withholding or bending the truth. Would it be more loving to correct them: “No, we’re not going to a wedding.” Or would it be more loving to bend the truth?
Some call this therapeutic fibbing. I still prefer to call it living in their truth because this is a disease that has made these stories their truth.
Everyone has their own version of reality. Folks with dementia have a reality that is just as valid as mine, and I treat them as I would like to be treated. —Karen
I don’t break rules, I just bend them to match what I need. —Keegan (My Boy)
© Jolene A. Brackey
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Creating Moments of Joy for People with Alzheimer’s

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