It happened in a flash, late at night, while I was in the Bunkhouse of my Mind.
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The words just seemed to fly out of my brain, into my hand, and onto my da Vinci pad.
We will start living our life the way we always had.
Was this a flash of caregiving genius? No not really. In fact it was a thought so simple I wondered why I didn't think of it sooner.
Although, and as it turned out, this was an important revelation that changed our lives.
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During those first 18 months while I was caring for Dotty it almost seemed like we were living in a cave. And somehow it seemed, we had disappeared off the face of the earth. We were slowly but surely becoming invisible, or so it seemed.
Friends and family started to forget about us. I guess they felt like the verdict was in - Dotty was living with Alzheimer's and there really wasn't anything you could do about it. Or, so they thought.
I actually wrote an article about some of those feelings I was having over time -
Thank goodness I decided it was time to come out of our cave and begin living again.
It was simple really. I decided that Dotty and I would start doing the things that we enjoyed doing together before she was diagnosed with Alzheimer’s disease.
I thought this would be easy to execute. I soon learned that I was wrong.
As it turned out, most of the time when I suggested to Dotty that we go to the pool or something like that she would say NO.
I had to find a way to work my way around this. It wasn’t easy. In fact, I gave up more than once.
But finally over time I learned how to be a guide instead of a bad parent to my mom -
Instead of trying to convince my mother to do something, or cajole or explain why she should, I
simply lead with a smile, my hand, and usually a few simple words like - let's go.
When Dotty asked, "where are we going"?, I usually explained as we were already in motion and moving in the right direction.
During this time I had already come to the conclusion that something had to change and that something was me -
This of course lead me to
A really wonderful place once you get the hang of it.
One of the first things Dotty and I did was to join a gym. Imagine Dotty going into the gym for the first time at the age of 88. This was certainly one of my best and most important decision.
Right after Dotty exercised she seemed more there, more lucid, and happier. Thousands of caregivers around the world followed my lead on this one, exercise, and have written to me to let me know it really does work.
So over time I developed a routine and then a program of action that allowed us to live our lives. I hope you are reading those words carefully.
We did have a life, both of us.
We went out, had fun, and even made new dementia friends.
So yes, to many we became invisible, but over time we learned there were some old friends, and some brand new, that were more than willing to help us live our lives.
About Author. Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,700 articles. Bob lives in Delray Beach, FL.The Alzheimer's Reading Room