I Want Out Of Here!
A couple of days ago, I was sitting next to my mother stroking her cheek, when she grabbed my arm, looked me straight in the eyes and said as clear as a bell:
“I want out of here!”
Now, if you’ve read any of my previous posts, you know that Sigrun no longer forms full sentences, that, in fact, she often struggles to get out whole words.
Yet here it was: “I – want – out – of – here!”
At first, I was thrilled to hear my mother expressing herself so confidently, so strongly, so uncompromisingly. Then, of course, I felt sad.
Now anybody who has a loved one living at an assisted living facility has probably heard that sentence, and it rings to the core of our feelings of guilt and sadness about not being able to take care of our family within our family.
However, I know that many of us who have our loved one with dementia at home have also heard that sentence.
And so I want to step away from my feelings of guilt and my pathologically literal mind (must be the German heritage!), and ponder the meaning of these powerful 5 words.
We have moved my mother 4 times since her Alzheimer diagnosis. The first move was into a reminiscence care unit. The second move was only 2 weeks later from reminiscence care to assisted living – she had proven herself higher functioning than initially feared. The third move took place when we all moved from Seattle to Denver. And the last move took her back into reminiscence care in a different assisted living facility.
At every place I heard “I want out of here!” Though she was generally happy, without fail, every couple of weeks she’d say “I want out of here!” And it took me months to realize that these words could take on a variety of meanings. The most dominant and most often recurring one clearly related to the disease. “I want out of here!” meant: I want out of this situation. I no longer want to have Alzheimer.
How often do we – who are not struggling with dementia – find ourselves screaming in our heads: I want out of here! when we are frustrated with the state of things around us – or even inside of us, for that matter? If it were socially acceptable, I bet quite a few of us would randomly pop-up out of our office chairs and yell: I want out of here! Imagine, instead of prairie-dogging over our cubicle walls to see what the others are doing, more and more of us would stand straight as an arrow exclaiming “I want out of here!” Could it be like a little angrier more direct version of Arlo Guthrie’s movement in Alice’s Restaurant?
Another meaning of “I want out of here!” that I have come to know is: I want to take back control of my life. I want to be in charge again. Then there is: I want to go back to a time in my past when I was leading the life I thought I was supposed to lead, when I was young and beautiful and desirable, had kids and a husband, traveled and partied, basically had the deluxe “American Dream” package. And, of course, there is the literal meaning of “I want out of this place.”
Over the years the meanings have become jumbled. Like a toddler, my mother finds herself overwhelmed with conflicting, puzzling, frustrating emotions, and where my 2-year old’s face goes blank right before she starts wailing, Sigrun would exclaim: I want out of here! (Since her more rapid decline over the last year and her increasing loss of words, she, too, now sometimes wails and occasionally even hits.)
Finding yourself in the eye of an emotional hurricane, disoriented, upset, not knowing why, is really not that unfamiliar; certainly not for the females among us who experience something similar at least once a month. Most of the feelings washing over the defenseless dementia patient I can find within myself, generally deep down in my gut. They seem primordial, vague, but clearly overwhelming. And to wrest back power from this impassioned morass it helps to define these feelings. “Give it a name” William Forsythe says in “Things to Do in Denver When You’re Dead.” Because if something has a name, it is less intimidating, easier to deal with. And during the last year, I feared, that my mother had lost the ability to give it a name. Yet there it was: “I want out of here!” And even if it is just “Aaaarrrrgggghhhh!” I will understand Sigrun. I will listen. “Aaaarrrrgggghhhh!” is as good a name as any.