My blog today is an article written by Bob De Marco, on his blog The Alzheimer’s Reading Room; it is well worth the read, and continues to show his incredible ability to have turned the pain and struggle of his role as a carer for his mother Dotty who passed away in May this year, to one that became more loving and comfortable for both of them. Thank you Bob.
“Once you accept Alzheimer’s World and learn how to operate in Alzheimer’s World you’ll learn that opposites can indeed attract. And stick together like glue. By Bob DeMarco, Alzheimer’s Reading Room
To understand Alzheimer’s you must redefine reality. This new reality is called Alzheimer’s World
Imagine communicating with someone for 50 years or longer. Then they change. They are not the person you always knew? If not, then who are they? Who?
This person you always knew, starts acting and coping with the world in new and different ways. Strange, bizarre, unsettling ways. Many of these new behaviors make you angry, they drive you crazy, you feel out of sorts. You just can’t understand.
You continue to try and make sense of what is happening in the way you always have. It doesn’t work.
Every day, many times a day, you are at wits end. You don’t know what to do. It’s hopeless. Or is it?
You know that something needs to change. But discovering this change — the what to do is elusive. You rack your brain. You just can’t figure out what to do.
Then finally out of the nowhere — the dark clouds separate. You see the light. You come to a conclusion that seems to be so simple.
Something has to change and that something is YOU.
Communicating in Alzheimer’s World
It takes a lot of energy, learning, and patience to deal with Alzheimer’s disease.
In order to begin the process of dealing with communication in a world filled with Alzheimer’s you first need to make a simple important decision — you want to decrease both your stress as a caregiver, and the stress of the person suffering from Alzheimer’s.
Read that carefully, you want to reduce stress. You want to change the dynamic. You want to change for the better — you want and need to change the way things are.
You might be wondering why I just repeated myself. Why? Because I believe it is necessary to get focused on what you want to accomplish, if you ever expect to accomplish it. It must become a deep and strong desire within you.
For example, someone suffering from Alzheimer’s disease just finished eating so you know they can’t possibly be hungry. Nevertheless, they tell you they are hungry and they want to eat. You remind them over and over that they can’t be hungry because they just ate.
Ever done that or something similar raise your hand? I’m raising both hands.
After the thousandth or so time of correcting my mother, telling her firmly she just ate, and watching her get frustrated or angry, I finally realized something had to change — this something was me. I had to change.
I want to interject here that my mother even after six years still tells me she is hungry right after eating. She frequently tells me after breakfast and lunch that she hasn’t had a thing to eat all day. She tells people on the telephone at night — I haven’t had a thing to eat all day. She — honestly — believes that what she is saying is true.
It only took me a few years to understand this and accept the new reality known to me as Alzheimer’s World.
My guess is that you experience the frustration of hearing your loved one repeating the same words that you believe to be untrue over and over. You see and experience the same crazy behaviors over and over.
What you believe to be true, and what the person that is suffering from Alzheimer’s believes to be true are often diametrically opposed. Sometimes the exact opposite.
Here is the one thing you need to understand. Your view of reality and your loved one’s view of reality might be very different. They are different.
Ask yourself, what are you doing and how are you reacting when someone suffering from Alzheimer’s says something you know to be incorrect or untrue?
What are you feeling when this happens?
Are you constantly correcting them?
If you are constantly correcting a person suffering from Alzheimer’s you are “cruising for a bruising”.
You are heading for the big stomach ache in the sky.
Say hello to your new found friends — anger, stress and angst.
Do you really want to befriend anger, stress and angst?
Sooner or later you must make a decision. Do I want to do this for the next ten years? Do I want to feel like this for the next ten years? Or, is there an alternative?
This isn’t simple to do, but it is necessary — you need to start accepting that when a person suffering from Alzheimer’s says something they believe to be true it is in fact a reality. It is their reality.
Welcome to Alzheimer’s World. Don’t be afraid or reluctant to step into this new and very different world.
In Alzheimer’s World, reality takes on a different shape. Reality is a reflection of what the person suffering from Alzheimer’s thinks and believes. It is this reality that you must focus on, not the way YOU think things are, or should be.
I feel confident when I say this — you are not going to be able to convince a person suffering from Alzheimer’s that they are wrong, and you won’t be able to convince them that your reality is the true reality.
When you do this you are asking the person suffering from Alzheimer’s to come back into your world.
Think about what I am saying here. I am asking you to develop a frame of reference, a new and different behavior that is one hundred percent diametrically opposed to the way you think and act – the way you thought and acted for your entire life. Whew.
This isn’t easy. It could be one of the hardest things you have ever tried to accomplish.
Once I made it into Alzheimer’s World I reaped rewards that are almost impossible to imagine or describe.
When you make it to Alzheimer’s World you begin the process of redefining reality. Instead of trying to brow beat your loved one back into your reality, you start to interact with them based on their view of reality.
For example. When my mother says, I am hungry, I’m starving — I say ok, we are going to eat in a little while. Instead of telling her — you just ate, you can’t be hungry.
If she asks how long before we eat, I don’t say in two hours — I say, in half hour or soooo. The so in this sentence means when it is time to eat. Either half hour, or when it is time to eat.
Instead of an argument, my mother now reacts positively to this response.
Over time she started saying something she never said before, instead of saying I’m hungry, I am starving, she sometimes says — Bobby, what did I eat today? Or, did we eat today? This difference might not sound like much. It is. Instead of complaining, she is asking. The tone of her voice and her demeanor are very different in this instance. When I answer by recounting our meals, she still makes a funny face, the face of disbelief, but she doesn’t get angry or upset, and neither do I.
When I recount to her what she has eaten I have to be very careful. Careful to tell her with a smile on my face, and in a low calm voice. Not like a lecture. If she gets that bewildered look on her face — confusion — that is ok because I can then change the topic.
If I allow my mother to get angry and disconcerted then she will start going into the black hole of Alzheimer’s World. When my mother goes into the black hole, I can feel the Alzheimer’s trying to drag me into the black hole. At the minimum, stomach ache for me.
I can only assume that by listening to her lament — I am hungry, I’m starving — and by responding to her reality rather than correcting her — our communication has improved. The amount of anger, stress and angst is greatly reduced.
This new form of communication leads to less stress, anger and angst over time. It seems to have a cumulative effect. Less stress build up across a series of situations, leads to less angry and nutty behavior from my mother over time. Our daily life improved and our communication improved.Less conflict, fewer explosions. More happiness.
Alzheimer’s Worldbecomes a good place, not a bad place.
The goal in all communications with a person suffering from Alzheimer’s should be to connect with the patient in a positive, constructive, effective way. So instead of telling my mother — you just ate. I accept her reality that she is hungry and respond in a positive proactive way.
What you want to be doing here is trying to establish a positive pattern of communication. This requires you to develop calm, effective responses that are easily accepted by the person suffering from Alzheimer’s.
By establishing positive patterns of communication over a series of situations you learn how to deal with the new reality that is at the core of what I call Alzheimer’s World.
The more you practice the better you get at it.
Before you know it, Alzheimer’s World becomes another dimension in your life. You learn how to operate effectively in this world. Instead of a sinister, confusing world it becomes a parallel universe.
Easier to understand, easier to accept.
I feel very confident when I say this. While a person suffering from Alzheimer’s can’t remember, they are still full of feelings and emotions.
As a caregiver, when you try to correct a person with Alzheimer’s you are likely to bring out a negative emotion in them. How would you like to be told over and over — you are wrong? How would you like to be corrected over and over? How would you like to be an object of scorn or exasperation over and over?
How would you feel?
What emotions would you be likely to express?
Would you like the person that is constantly treating you in the way I described above? Would you be nice to them?
I’ll let you decide the answer.
Effective communication with someone suffering from Alzheimer’s requires you to identify the emotion behind the person’s words. To learn ways to address what they are feeling and to validate those feelings. Right now, it is likely that when a person suffering from Alzheimer’s says something that is opposed to reality -as you understand it – that you immediately feel an urge to correct them (or worse). This is a normal feeling and reaction. Don’t forget you learned how to react this way over the course of your entire life.
Is this you? It’s OK. But only to the extent that you understand this is the way you communicate in the other world — your world outside Alzheimer’s.
Coming to an understanding that you must develop new and different ways to communicate in the new world — Alzheimer’s World — is an essential step to effective Alzheimer’s care giving.
Change is never easy. You’ll need to practice every day.
If you are caring for someone with Alzheimer’s you will need to go into their world — Alzheimer’s World.
The first steps are to start listening to what they say. To accept what they are saying as a “reality”. They believe it to be true, why can’t you?
Understanding that Alzheimer’s World’s reality is different — is a big and important step. A necessary step to communicating effectively with someone that suffers from Alzheimer’s. While you are at it try and remember this. They have Alzheimer’s. You are the caregiver. It really is up to you to change. It is up to you to adjust.
The person suffering from Alzheimer’s would adjust if they could – they can’t.
I want to close by giving you this construct.
I often think of my mother and myself as two magnets. Every magnet has two fields — a north pole and a south pole.
If you put the two north poles together (or south poles) the two magnets will repel each other.
If you put the two opposite poles of a magnet together they will attract each other. They will stick together (like glue).
Once you learn to put these two opposite poles together your life as an Alzheimer’s caregiver will change. On the other hand, if you keep trying to put the same poles together they will continue to repel each other.
Once you accept Alzheimer’s World and learn how to operate in Alzheimer’s World you’ll learn that opposites can indeed attract. And stick together like glue. This is a very pleasant and rewarding way to feel.
My name is Bob DeMarco, I am an Alzheimer’s caregiver. My mother Dorothy lived with Alzheimer’s disease for many years.”