"Scared All the Time"

Dementia is scary.

I know you're scared.  You're afraid of what's coming, and of not knowing what to do.  You're afraid you won't be able to handle what comes.  You wish it would all just go away.

For a moment, though, I would like you to think about how scary it is for the person you love.  In the early stages of dementia, they are very much aware that they are losing the ability to cope with the world.  Their fear at this point is twice as bad (in my opinion) than any fear we could possibly feel.  They know that their mind is slipping away, and they know that their condition is going to mess up your life royally.  And they know there's not a thing they can do about it.

One of my biggest regrets is how I interacted with my mom in this stage of her disease.  We were still in the "there's something wrong but we're not going to talk about it" mode.  I was home on a visit, and the two of us were alone together.  I don't remember how she brought up the subject, but she said, "You know, I might have Alzheimer's like Papa did.  I worry about your dad.  I don't want him to have to deal with all that."

Here's what I wish I would have said:  "Mom, what is most important is that we all love you, and if you have Alzheimer's we are going to do everything within our power to help you.  Please don't worry about Daddy.  Mary and I will be here to help and support you both.  We love you both, and whatever happens, we're here for you."

Here's what I said:  "There's nothing wrong with you!  That's not going to happen!"

I had an opportunity, at a point when she was aware that her mind was slipping away, to reassure her and put my arms around her in love.  But I froze.  Denied.  Dismissed.  I did these things because of my own fear and my unwillingness to face the truth of what was happening.  And my reaction probably made her feel even more alone and afraid of what was to come.

Yes, dementia is scary.  For everyone involved.  As hard as it is to face, I ask you...I beg you...to try to put yourself in your loved one's place.  How would you want people to behave toward you if this nightmare was happening to you?  I know it's hard.  But I am here to tell you that you will not regret the moments that you empathize with them and treat them with compassion.  I read once that bravery is being scared, but doing the right thing anyway.  Being scared is part of this package, but we all have the choice to do the right thing anyway.  Be brave.