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when diagnosed - a Proper Start - learning to work together
Posted: Thursday, June 26, 2014 1:24 AM
Joined: 9/12/2013
Posts: 3561

How different would it have been if following the diagnosis we had met with someone who helped set a course for us?  


Someone might have said, "This is a difficult time, a lot to take in. Those diagnosed with the disease can help teach those those involved what helps and what doesn't. You will come to understand people have different gifts and abilities. Some can not handle the challenges, the changes. Some you hoped would come through will fail, and some people you never imagined will become great support and friends. 

The most important factor in weathering the illness is a loving, safe environment for all concerned.  Learn from those who have done well, read books, use organization's sites, see what fits your core values.

"Set a course for patience, tolerance, and Fresh Starts. Forgive quickly. The experience will overwhelm you, enlighten you, alter your reality. Know what matters most to each other and do your best to provide that. You will need time off knowing there is a need for recovery time for all endeavors. Those with the illness need time to adjust to the functional changes that come, to needing help.

"People with Alzheimer's benefit from a space to retreat, their own chair in a quiet place to ponder, processing life takes more time so allow for that. Walking in natural settings helps everything, a dog is great medicine. Learn the language of Alzheimer's, learn to slow down.


"You will discover what you can do and what you can't. When you do not know what to do, simply be a Loving Witness, provide shelter, be a protective presence. Everyone goes through difficulties but it is through our reactions that we keep the course.  Keep happiness a basic part of your new life.

" When the day seems impossible, remember you always have a fresh start."

Some of us do not have a circle of friends and family to help out, some of us will lose our partners. Alzheimer's is a chance to live in the now, to loosen our grip a little, to embrace the unpredictable. We learn to let go and stay close, we can unfold into it.


  "I'm sorry," heals a lot of wounds. "I forgive you. Will you forgive me?"
 when no advice is enough, seek help...wishing us a soft landing.

Posted: Wednesday, August 20, 2014 11:58 AM
Joined: 9/12/2013
Posts: 3561

 Article below from Alzheimer reading Room blog by Bob DeMarco

 on the puzzle of communicating with a person with dementia. There is a way and that way, allowing us to have the illness, allowing our brain functions to not be challenged as "wrong" or demanding we communicate like we used to, asking us to understand you when your way of speaking leaves us more confused and frightened and frustrated that you do not understand we are doing the best we can.


I am able to speak to this today because my husband and I fought and struggled after my diagnosis (and before it was diagnosed). I was very angry, and he was angry I was angry. We read several books and looked up information online but there was a divide. That divide I COULD NOT CHANGE, only he could change - and he felt he was FINE so why should he? This divide caused me a lot of suffering.From reading caregiver boards it is the NORM.


If you are willing to learn how to come into our space we can relax. It is terrifying to be with someone who thinks you are wrong all the time, it makes for an angry reaction when those who are in charge of our lives looked so panicked, fed up and stressed out. Door slamming, cutting us off when we try to speak, correcting the way we do things now that we have to do them differently CREATES an environment of FIGHT OR FLIGHT in us. Not the illness, as I can tell.


 Worry about what relatives or friends is not helpful, but it all takes time to sort out. Save yourself and your loved one a lot of stress and grief by adapting. YOU adapt to our losses and still keep your "normal Life". When we finally got it, as shown below, our home life became mellow, the panic in me dissipated quickly, he became calmer in many ways about Life. Your willingness to enter our world is the only treatment that works for Alzheimer's patients and it is worth the effort. Learn to smile when you enter our world. 



 Alzheimer's Robbed Us of Our Ability to Communicate

Our communication and the way we related to each other changed - abruptly, over night. It was as if our ability to communicate effectively had been robbed from us.

By Bob DeMarco
Alzheimer's Reading Room

Alzheimer's Robbed Us of Our Ability to Communicate

I knew and understood the changes that were being caused by Alzheimer's disease. On the other hand, my mother couldn't see the change. She couldn't understand what was happening.

When my mother would say something mean, or act out crazy behavior, I experienced the same emotions that most Alzheimer's caregivers experience -- anger, frustration, and agitation.

Over the course of my life I had learned how to cope and deal with problems. They no longer worked  with a person living with dementia.

Looking in from the outside at Alzheimer's, most people would conclude its easy to come to an understanding that the meanness and craziness are a direct result of the disease -- Alzheimer's. Alzheimer's causes these erratic behaviors.

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Outsiders often conclude you simply adjust and come to an understanding that Alzheimer's is the cause of the behavior, and as a result you can just shrug off the meanness and craziness.

This is far from the truth and the reality of the situation. 

It is almost impossible to explain to someone how difficult this adjustment can be. How difficult? It took me years. Years while I was trying to do it day after day after day. Every day.

I finally made the leap when I first discovered Alzheimer's World. I started to develop pictures of the behavior, and finally came to some simple conclusions.

I had to change my mother couldn't.

I had to find a way to get into Alzheimer's World, instead of trying to drag her back into Real World. She wasn't coming back. Never.

Here is how our life looked before Alzheimer's.

Alzheimer's World -- Two Circles Trying to Intersect

My mother had her life. I had my life. Our lives clearly intersected and we had all of our shared experiences stored in the intersection of the two circles.

We had an understanding and frame of reference that we developed over our lives. We knew each other very well. We knew how to deal with each other.

After Alzheimer's struck, this is what our life looked like.

Alzheimer's World -- Two Circles Trying to Intersect

It was like we were two new and different people. I guess you could say, we had to get to know each other again.

I thinks its obvious that when you first meet someone it takes time to get to know them. Over a long period of time you get to know and understand them -- better and better.

In this case, I had to find a way to accept and deal with my mother's new found behaviors. Behaviors that were hard to understand, comprehend, and out of the normal compared to our long life together.

The challenge. How to learn how to accept; rather than, becoming angry, frustrated, confused, and bent out of shape.

There are only two choices. Walk away and hand the problem to someone else. Or, learn how to love and care for someone that does things that would normally would make you do what you would do in choice one -- walk away.

You have to choose. You can choose change and understanding. Or, you can try what I call the hamster approach -- The Alzheimer's Hamster Within YOU.  Run around the hamster wheel faster and faster, and get no where fast.

If you choose the hamster approach you'll most likely end up bitter and angry, or worse -- depressed.

You are the one that must decide.

I finally came to the conclusion that before I could make the leap into this new world, Alzheimer's World, I needed to construct a new mind set. A new place in my brain.

I was finally coming to an understanding of what I wanted to do and how I was going to do it. But in order to conceptualize my current situation, and future goal I needed a new construct of our relationship.

This is how I began to picture my new relationship with my mother.

Alzheimer's World -- Two Circles Trying to Intersect

The yellow section is the intersection of my mother's world (red circle), and my world (green circle).

I call this yellow intersection Alzheimer's World.

In the Alzheimer's Reading Room, I write about my own efforts to understand, cope, and deal effectively with Alzheimer's.

If you would like to gain an understanding of my views, my own metamorphosis with Alzheimer's, my insights from the early years of caring -- go here.

If you want to learn more about Communication in Alzheimer's World search the Alzheimer's Reading Room Knowledge Base. Look for the Knowledge Base search box on the right hand side of the page. You can start by entering these keywords into the search box - Alzheimer's World - or - communication.

I continue to develop articles on Alzheimer's World, and how over time I developed a plan to make the leap into Alzheimer's World.

How I learned to get into Alzheimer's World, how I learned to function in Alzheimer's World; and how together, my mother and I learned to thrive in Alzheimer's World.

Dotty and I learned how to live our life one day at a time. We coped and communicated with each other  in the intersection of our lives best described as -- Alzheimer's World.

Once we entered Alzheimer's World we stepped off of the path of burden and on to the path of Joy.

It was not obvious to us at the very beginning where we were going, so you have to walk the path for a while until your new and improved method of communication starts to take hold.