Forever 21

My sister was given a book that apparently explains how a person with dementia is thinking and feeling.  She is going to send it to me as soon as she gets home (she is on vacation at the moment).  So, me being impatient, looked up “how a person with dementia feels” and “what a dementia patient is thinking”.  What I encountered was a very heart rendering number of articles and blog posts about what could be going on behind the lost eyes.  I started a blog post entitled, “The fear in her eyes” – I just haven’t gotten around to finishing it, but it was the same thing as some of the articles I read.

The hard nosed part of me wanted to ask – how the heck would anyone be able to ascertain how a person with dementia was thinking or feeling?  Well, feeling is different because confusion, fear, listlessness, detachment, and lassitude are easy to see.  Mom can’t hide her dispassion and her lack of interest.  When I ask her what she is thinking she always says, “Nothing!” and laughs.

What did make sense to me is that no matter how much I try to remind mom of days gone by, she seems to be stuck in college.  She goes by the name, “Mom”, but I’m not sure if she understands any longer what that means.  After reading a few pieces, here is what I gather:

1 – I need to find out how old she thinks she is.  She will answer that she is 84, but her actions and responses lead me to believe she thinks she is in her 20’s.

2 – I need to look for and listen for clues and cues before responding or before leading her into situations.  She is very quick to want to follow me everywhere and when we are home, she “checks” on my whereabouts frequently.

3 – I need to understand that I am in charge.  She can’t be responsible no matter how strong she looks or even that she seems clear.  This does not mean that I am the general.  What it means is that with gentleness and love, I am to lead her – not direct her.

I wish I could have known this last year.  We were at the store one day – just shopping for essentials and got ready to go to the checkout line.  She always pushes the cart because it gives her a sense of security and gives her something to do.  I paused to dig around in my purse for my wallet when I heard a noise that I knew was mom’s voice.  There she was, riding past me on the cart saying, “wheeee!”  Yup, it was my 83 year old mom who thought she’d push the cart as fast as she could then hop on for the ride.  She laughed and said it was fun.

I know there will come a time when none of these lessons will matter because she will slip into stages 6 and 7 and the directive will certainly be different.  For now, I will save up her little bursts of what I call sunshine for a rainy day.

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