Dementia – It’s Not Their Fault

Dear Dementia Diary,

Stop and think about this.  If I had a broken leg and was struggling to get the door open, would you help me open that door?  Of course!  It’s human nature to assist when we see someone in need.  Now, I have a broken brain and I say and do things that are not “normal” in our society.

How can you help me?  You can smile at me and not point out my mistakes.  If my brain was not breaking down, I would not be doing or saying these things.  That human desire to assist someone in need is required even more for people living with dementia.

What might it be like to have dementia?  My first thought is its incredibly frightening.  It is the fourth most feared disease in the world and my bet is that it is slowly creeping up the chart. We all crave safety, security, a sense of purpose and to feel in control of our lives.  All of these are compromised.  Can you imagine this for yourself … that you are unsure of your surroundings; that faces and places don’t seem familiar any longer; that you are unable to do the activities of daily living without an incredible amount of thought or even having someone else do them for you?  Do you realize that it takes over 80 steps to make a cup of coffee?  A simple task that we all take for granted.  Our healthy brains can do most of the steps without even thinking.  Now, put yourself in the shoes of someone living with dementia.  It must be so frustrating!  No one signs up for this.

It is said that when you meet one person with dementia, you have met one person with dementia.  This disease will affect you and me very differently.  It is not black and white, but can be various shades of grey.  Understanding this disease is paramount and understanding how this disease is affecting a person is a valuable tool for you and for the person you are supporting.

There are three ‘categories’ (I’m not big on labels) of persons with dementia:

  1. Those who have an awareness that their thoughts are getting cloudy (also referred to by many as the “fog”), that words don’t come as easily and that tasks they could do with their eyes closed are overwhelmingly difficult. They understand that this illness is going to create change in their lives and, also, for their families and this saddens them.
  2. Those who have an awareness, but are not willing to admit it.  They have, usually, held a position of authority or power within their careers or home.  People around them are noticing the changes, but the person with dementia will deny and hide those changes.  They may have run a successful company and are now having difficulty managing their own finances.
  3. Those who have no awareness.  They go about their daily lives with many “mistakes” or forgotten answers to questions that may be asked over and over.  There is nothing wrong with them.  It must be you.  As one woman with dementia once said to me, “I’m not stupid. I have dementia”.

 

As we progress through this disease together, let’s find it in our hearts and healthy minds to keep the perspective of what it might be like to be the one with dementia as it’s not their fault.

Take care.

Don’t wait. Get support.