I am trying to help Dotty not to forget, I accept that she won't be able to remember.
Alzheimer's Reading Room
In Alzheimer's Disease Tip Communication and Socialization (Part 1), I started writing about how communication and socialization go hand in hand.
For Dotty and me, I made a simple decision early on -- we would continue to live our life as we always had.
This decision forced me to take an inventory of the activities that Dotty engaged in before Alzheimer's disease. It also forced me to focus on the kinds of things we did together that made Dotty happy.
I am going to say something here that some Alzheimer's caregivers might find difficult to accept. I am trying to help Dotty not to forget, I accept that she won't be able to remember.
Topic - How to Reduce Caregiver Stress
For us, there were no white boards or post it notes. I am not opposed to caregivers that use this as part of their daily strategy. Quite the opposite, I am a proponent of you doing whatever works best for you. It is the doing that is important.
I was fortunate when our doctor at the time, Dr Chiriboga, sat me down, looked me straight in the eye and told me to let my mother to continue doing everything she could do. The inverse, don't do it for her. He told me that I might receive some criticism from people that didn't understand what I was trying to accomplish. He went on to say, you are the ONE, the only one that knows what she can do. So let her do it.
These words changed our lives.
Memory Care - Why Do Alzheimer's Patients Have Lucid Moments?
It was sometime after that conversation that this thought came out of me like a bolt of lightening -- we will continue to live our lives as we always had.
And with that realization I somehow decided the sky was the limit.
In a previous article, Alzheimer's Care, the Importance of the Early Morning Wake Up Routine, I wrote about how we start each day. This includes my mother reading the newspaper and starting by telling me the day and date. We then move on to the front page or the food section.
Topic - Dementia Care
I understand that this will not work for every single Alzheimer's patient. Why? Well some of them cannot read because of eye sight. Others can no longer read. It is easy for many Alzheimer's caregivers to tell me that reading the newspaper won't work for them.
Really?
Well how about this variation on a theme. You read the newspaper to them. You start by reading the day and date. You might interject something very positive. You could say, it is really nice and sunny today. Or, you might say you look nice and happy this morning. Or, I really like those pajama's you are wearing. Make it positive and say it like you mean. Mean it.
You could then read the front page and try to discuss it, or at the minimum get some kind of reaction. Let's say your Alzheimer's patient can't speak much, is speaking gibberish, or won't react with their mouth. How about you read to them and then look at the look on their face. Watch for the nonverbal cues. Look to see if they smile or if they have any reaction on their face. Let me tell you this, if you read something and they laugh your heartbeat will elevate. Happiness will abound.
If they like food or recipes try that. Or just read the comics. What did they enjoy or do before Alzheimer's?
Plug in.
It is very easy for Alzheimer's caregivers to say something won't work. Pretty soon you'll convince yourself nothing will work.
You'll have a hard time convincing me nothing will work. The reason and rationale is easy -- I know and believe that there is "more there". I discovered this on my own.
And now, there is a growing body of scientific and observational research that indicates that there is more there. Go look at this video and watch the look on the faces of the persons suffering from Alzheimer's disease.
One of the reason that there is more there is because while the hippocampus (the region of the brain that is used to store memory) is damaged, the other regions of the brain are still working. And it is these regions of the brain that you are going to plug into.
Now I know, I could read the day and date in the newspaper and the food section twenty times a day and my mother still wouldn't remember any of it.
I am not concerning with her ability to remember. I am concerned with the level of engagement and the look on her face. I am fighting as hard as I can to keep that dull look, the not there look off her face. It is a constant battle. I just don't like that look. I'm willing to fight.
On any given day, my mother might start to get that dull withdrawn look on her face. This tells me time to take action.
One good way to combat this is to have a friend or a neighbor talk to Dotty (in person) for a few minutes. Every single time, the look on her face changes. Her voice gets louder. She gets more engaged. This is exactly what happened before Alzheimer's disease came into our lives. My mother likes to "yak".
If I can't get someone to talk to her in person, its on to game plan B. The telephone. I have watched as my mother went from mean, cantankerous, and dull to happy and smiling after a short five minute phone call.
She becomes more engaged. This is the goal. Bring out the more there, get rid of the less there.
Everyday in the afternoon I take my mother out of the house and into bright light. If it isn't bright outside, I go find the bright light indoors. Indoors but out of the house.
Bright light works. But there is another goal -- to live our lives as we always had. This means out and into the world. On a good day, someone gives my mother a nice smile. On a great day, someone, a complete stranger, stops and talks to my mother. A complete stranger engages my mother in conversation.
This is an important part of my overall strategy, keep my mother engaged and socialized.
One big excuse I hear is that I can't take them out because they eat with their hands. It really is easy to come up with excuses to stop living your life.
This problem is easy to address. When you go out you go to places where they can eat with their hands. There are all kinds of foods that you can eat with your hands -- socially acceptable eat with your hands foods.
I wrote last time how I failed miserably when I thought I would be doing something good by getting Dotty all "dolled up" and taking her to a nice restaurant. Well this is one thing we did when we were living our life before Alzheimer's. It didn't work this time around.
My point here is that it is easy to have false starts. To try things and then get the exact opposite reaction that you were hoping for. Don't let this discourage you. Here is what is important, you are trying to discover what does work. And, along the way you will likely discover what won't work.
Trial and error. Keep your eye on the ball.
Remember this.
Communication and socialization makes someone living with Alzheimer's happier and more there. Communication and socialization makes the Alzheimer's caregiver happier and more fulfilled.
It is like a win-win strategy. Why? Because when they start living their live the way they always had, you start living your life too.
My point. Go live your lives. Don't let the simple fact that the hippocampus is sick and that they can't remember stop you.
You'll remember all of this later in your life, and you'll remember your own wonderful accomplishments as an Alzheimer's caregiver.
More there, less there.
You choose.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
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