If you make Alzheimer's caregiving about you, and how you are feeling, with little regard for why the Alzheimer's patient is feeling the way they are, you are the one that is going to suffer the emotional chaos right along with them.
By Bob DeMarco
Alzheimer's Reading Room
Well, you didn't lose your memory. What you did do was forget to register in your memory where you were put your car keys. If you didn't register the memory, then you don't remember where you put your keys. Its time to hunt.
The key word here is you did not 'register' the memory. You didn't save it in your brain.
Now imagine for a minute that you were no longer able to register any of your new, right now memories. You couldn't remember anything new even if you tried, or wanted too.
Welcome to Alzheimer's World.
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Polls show that 80 percent of Americans know what Alzheimer's is. Do they? I doubt it.
Why do I doubt it? Because most newly born Alzheimer's caregivers have a very hard time, and have to go through a very long process before they understand Alzheimer's.
My first question. Why is it okay for you to get bent our of shape, anxiety ridden, and confused when you can't find your car keys; and not okay for Alzheimer's dementia patients to get anxiety ridden and confused when they can't remember?
How are Alzheimer's patients different from you and me? Frequently, they live in an almost constant state of chaos. They really can't remember what happened today, so they can't sort it out.
Chaos: a state of utter confusion
Lets start with a simple example. Did you ever notice when you go out and then return your Alzheimer's patient is often mean, or challenging, or nearly impossible to deal with?
They are angry.
Did you ever ask yourself, why are they angry? Or instead, did you think to yourself, they have no reason to be angry, I didn't do anything wrong?
The AHA moment. Is it about you and how you feel? Or, is it about them and how they are feeling?
Is it possible that the Alzheimer's patient is confused and in an actual state of chaos - chaos a heightened state of confusion.
Is it possible that the Alzheimer's patient is about 10 or 100 times as confused as you get when you can't find your car keys? Imagine being 10 times as confused or worried when you couldn't find your car keys. You might actually become afraid or scared when you couldn't find the keys. Did you ever think, I am never going to find the keys. How does that feel?
By they way, this applies to any time you can't find something important or that you need. Do you ever reach the point where you experience a feeling of hopelessness when you can't find something?
So now imagine this. You go away for a while and leave an Alzheimer's patient alone. Here are some the feelings they might experience. They can't remember how long you have been gone. They don't know where you went. They don't know "what you are up to". And frankly, they don't know if you are ever coming back.
Might they then be experiencing feelings of hopelessness and confusion? A series of chaotic feelings that totally encompass them?
The moral here is simple. You cannot leave Alzheimer's patients alone all day, or even for a short period of time. In most cases, and after a certain point in the progression of Alzheimer's disease, they will begin to enter into a state of emotional chaos if you leave them alone. A heightened sense of hopelessness, confusion, and anxiety that grows by the minute.
Alzheimer's patients are attached to their caregivers by what can best be described as an invisible "umbilical cord". They rely on you to bring homeostasis to their lives.
Homeostasis in this case means bringing a state of psychological equilibrium to the AD patient. To create a stable environment that avoids the introduction of stimuli that can lead to confusion, anxiety and anger.
The job of the caregiver is to create a stable, almost not changing, environment in which AD patients can thrive.
To create a homeostatic environment rather than a chaotic environment.
The only way to do this effectively is to introduce a routine to your day. A pattern where on most days everything is going to happen in the same way, and around the same time, as the day that came before it
Get up read the newspaper and discuss new events with me. Talk and sing with Harvey. Eat. Do the crossword puzzle.
Later in the day eat lunch, listen to music, sing. Take a nap or two.
In the late afternoon or early evening, go out into the bright light. Go the pool, go ride the electric cart at Walmart, get an ice cream cone, go to the grocery store. And so on.
Instead of leaving the AD patient alone you have to get actively involved with them. Like it or not. You have to develop activities and routines.
If you don't create a stable environment AD patients will enter a state of emotional chaos and you will have one rotten day after the other.
Try to remember that the AD patient are the one(s) suffering from memory loss. Mostly everything is driven by memory loss.
The only way to combat the natural chaos that comes with memory loss is to create homeostasis.
Try and remember this. If you misplace your car keys you will find them.
However, if you make Alzheimer's care about you, and how you are feeling, with little regard for why the AD patient is feeling the way they are, you are the one that is going to suffer the emotional chaos right along with them.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room