I've been doing a little research on the web to try to figure out what is going on inside Mom's head. What I have found is there is darn little on the topic.
Oh, there is plenty on how to deal with dementia and the right thing to say and the wrong thing to say. That is not what I am searching for -- what I want to know is what is going on in Mom's mind. Is she aware of how much she has lost and simply can't put it into words?
The other day she introduced me to her dining companion as "her daughter." She didn't call me by name, but she knew I was her daughter. Two hours later when my sister visited her, she didn't remember I had been there. What I want to know is what is it like for the person who no longer thinks clearly. What kind of jumbled confusion is going on in her mind?
I found a letter from Mom, written three years ago on my birthday. It started, "Dear Daughter, I know I'm slipping. I try the best I can . . ."
I don't know how much any of us realized what was going on at the time. One of my older sisters saw it, but it was difficult to tell how much was Mom "slipping" and how much of it was her trying to cover up the fact she could not hear us. Everyone was frustrated with Mom for "not trying." Personally, I think she was trying as hard as she could and had been for years. She just couldn't hide it any longer.
Mom's letter went on to say she and Dad had joined the YMCA and that she walked a mile on the track (19 laps) and then rode a stationary bike while Dad "gives it all a try." I'm assuming she meant Dad worked out on the weight machines in addition to the treadmill.
A few weeks after the letter was sent, Mom and Dad were getting ready to go to the gym when Dad had a stroke. They thought he wasn't feeling well and decided not to go and Dad napped the rest of the morning. It was later that afternoon that Mom called my sister at work and said she needed help with Dad. My sister called the ambulance while she was on her way to Mom and Dad's apartment. The ambulance was already on the way and we thought Mom had been able to call for help. That wasn't the case. A neighbor had found Mom in the driveway in a panic and called for her. Mom didn't know how to call 911.
It's hard to believe that was just three years ago. Three years ago, Mom realized she was slipping, but could still write me a letter to talk about it. Today, she can't sign her name. How much of this lost knowledge is still there, trapped inside her brain, trying desperately to come out? How frustrating is it to not be able to tell people what you are thinking?
Mom is pretty quite these days. She doesn't talk much.Is it because there is nothing to say? Has she given up trying to communicate because it it too frustrating to get the words out?
What is it like to lose your mind?
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