It is important to understand how people living with Alzheimer's lose their sense of time and how this can impact your Alzheimer's care and dementia care efforts.
The decision you are making is between having a patient who is mean and confused, or a patient who is kinder, gentler, and cooperative.
We live, organize, and regulate our lives through the understanding of time.
By Bob DeMarco
Alzheimer's Reading Room
Most people look at their watch (or cell phone) throughout the day to determine what time it is. We often relate this to where we have to be, what we might be doing later in the day, or against some nearby future event that requires our participation.
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If we did not know the time or what day it is, how would we function?
Early on Alzheimer's and dementia patients lose their sense of time. They no longer know the date, or the day, or even what season they are in. As a result, they are often confused. This confusion can lead to challenging behavior, anger, and even a loss of self.
When you go out of the house or away from a person living with Alzheimer's they have no real understanding of how long you have been gone. As a result, even if you have been gone for only a short period of time, 15-30 minutes, they might think you have been gone all day.
Or worse, they might conclude you are abandoning them, never coming back; or that, "you are up to something".
This is exactly what happened to me.
I started noticing that my mother was repeatedly telling my sister - I don't know what he is up to, he was gone all day.
When she would do this I would immediately say that is not true - I was here all day.
Finally, I started thinking about it and realized that sometimes I would put the trash out and while gone I would talk to one of our neighbors. I was out maybe 15-20 minutes. Since my mother no longer had an real concept of time, she concluded I was gone all day.
On other occasions, I took a quick trip to the store to pick up a few items. I was gone maybe 30 minutes. Mom's conclusion, gone all day.
Of course, sometime I did go out for hours on end. Ditto.
I started to notice that regardless of the length of time I was gone my mother would get angry, and she was very difficult to deal with that day. This always lead to a miserable period of time for both us. Keywords - both of us.
I finally put one and one together and made a three.
First, I realized that when my mother told my sister I was gone all day, it didn't matter what I thought and believed. What mattered was what my mother thought and believed. She believed I was gone all day.
Second, I finally realized we had reached the point where I could no longer leave my mother alone. I couldn't leave her alone for even 15 minutes. Not if she started looking for me, and couldn't see me.
Telling a dementia patient you are going out to throw out the trash and then staying out for 15 minutes talking to a neighbor won't work. In other words, they won't remember what you told them, and they might conclude you have been gone all day.
Time is an example of how Alzheimer's effects the brain. Sadly, we the caregivers are prone to getting angry at a dementia patient when they accuse of something that is untrue.
In the real world it is okay to get angry if you are falsely accused. By in Alzheimer's World when a dementia patient makes a false accusation it is actually a function of the disease, and not with the intention of being hurtful to you.
Two other things I noticed about my mother.
- She was constantly hungry, and would say right after eating - "I'm hungry I'm starving".
- My mother never knew what season it was. When it was the middle of summer and hot, she would want to put on a heavy coat before going out. When it was the middle of winter and cold outside, she would insist it was warm out and she needed a coat.
In the second instance, I learned how confusing time can become to a person living with Alzheimer's. My mother had reversed the seasons in her brain. Just so you know, this happened hundreds of times. She would insist she needed a coat when it was hot, and insist no coat was needed when it was cold.
Here is what I learned, and what I learned to do.
- I couldn't leave my mother at home, not even for 15 minutes. So I had to take her with me every where, every time. Yes, this can be difficult and tedious. However, the choice of leaving her alone or having a miserable day was an easy choice. I chose the more difficult task of taking her with me over the emotional pain that I could expect if I didn't.
- I had to develop a daily routine to bring a sense of order and time to my mother's life. To the degree possible we tried to do that same exact things, in the same exact order, and at the nearly exact time each day. This really paid off big. My mother was always less confused after we added a consistent routine to our life.
- In the morning, I had my mother read to me the day and the date from the top of newspaper. This was designed to bring some order to our lives. I think it worked well. Don't you want to know the day and date? Don't you check this all the time? Well, my mother knew the day and date for about 87 years. I figured her brained was trained to need this information in order to function. So, I decided to supply this information to her brain every day.
- When my mother would say, I'm hungry, I'm starving, instead of correcting her and telling her she just ate, or couldn't possibly be hungry, I started looking her right in the eye, smiling, and then saying, okay give me a few minutes and then we will eat. Pretty simple solution, huh? It worked. And no, we didn't eat in a few minutes, instead she forgot she was hungry.
- Finally, I introduced Harvey the Repeat Parrot into our lives. Harvey actually allowed me to throw the trash out, work on the Alzheimer's Reading Room blog, and go to the bathroom without my mother accusing me of being gone all day.
To be honest, I was so busy talking care of my mother that I also started losing my sense of day and date. I guess you could say my mother was reading the day and date from the newspaper for both of us.
Please take the time to understand the issue of time in Alzheimer's and dementia patients. The decision you are making is between having a patient who is irascible (like that word?), and a patient who is kinder, gentler, and cooperative.
As always you get to choose. My advice?
Don't leave a person living with dementia alone - even for a short period of time. Help the person living with dementia to regain a sense of time by reminding them often each day of the date, time, and season.
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*i·ras·ci·ble - having or showing a tendency to be easily angered. Irritable, short-tempered, testy, edgy, crabby, petulant, snappish. Cross, surly, crusty, grouchy, grumpy, cranky, cantankerous.
*Dementia care is the art of looking after and providing for the needs of person living with Alzheimer's disease or a related dementia.
Original content the Alzheimer's Reading Room