Yesterday, my companion with dementia and I were driving to one of our favorite places: the local thrift store.  As we drove, she spontaneously erupted into singing the song, “The more we get together, together, together, the more we get together, the happier we will be.”  So, of course, I joined in.  We have sung this song together many times now, and each time, we smile, giggle, and enjoy.

THIS is what freedom feels like.  And it is profound.

Let me see if I can explain.  My companion has advanced dementia.  She benefits from many hours of dementia-specialist care each day.  She benefits from help in many areas; but only because it is help provided in a dementia-specialist, caregiving-by-stealth manner.  She has previously rejected help that was brought into her life in a “I am here to help you” manner.  You see, she has anosognosia, as do most folks with dementia, which means that the part of the brain that would allow her to be aware of her deficits, and aware of the fact that she needs help, is failing.  

So why in the world would we expect someone with dementia to welcome “help”, when they are most often neurophysiologically incapable of understanding that they need help?  But I digress; we were talking about what freedom feels like.  

When I am able to manage my companion’s environment in such a way that she feels secure (emotionally secure, even though she has advanced dementia), we are able to enjoy well-being.  But setting the stage for the experience of freedom means that I have first had to help her feel secure, which often times means that I listen well while she processes out loud what it is like to have a brain that just isn’t working right.  Take note: when we get it right with dementia, most folks will be grateful for the chance to process (out loud) the grief and uncertainty they have regarding their changing brain.  

In these moments, my companion has the freedom to express herself, to say things like, “I can’t quite make sense of what is going on with my brain.”  And after I have listened intently and allowed her to share (usually about 45 minutes), she will say, “Thank you.  I just needed to vent a little bit.”

Freedom.  Freedom to share whatever she wishes to share, with no judgement, and sincere interest  from me, even though much of what she is saying has holes in memory and rational thinking.  It does not matter; I understand, and I give her dementia-specialist freedom to be whoever she is, in whatever version she is, whenever.  

So as we drive, we sing.  She is free to be herself, even with advanced dementia.  And I, too, have more freedom; to sing along, to join in the fun of her world that is based in this very moment, and know that I have had the honor of managing her environment in a dementia-specialist way…so that she could be free.

There is hope, and there is beauty, and there is freedom in dementia.  It lies in the way we provide care.

Breathing deep,

Jill

©Jill Couch