- Phillip Booth, 1990
My very first client with Advanced Alzheimer's.
If I could, I would visit you in the Afterlife and tell you what a cosmic impact you had on this graduate student's life.
I first met you when I opened the electronically locked door to the Memory Care Unit. At 5'3", thin as a reed, and as steady as two reeds poorly fastened together, you hobbled up and said something I will never forget.
"Smaa tule reen. Doh CAP!"
You were telling me something. And then you were asking me something. And in our time together you only came out of the word salad fog 2 or 3 times - one sentence, and a couple of words. I have to tell you, quite obviously, I had no idea what you were trying to tell me. But you were out of your room and you were being social and you weren't pulling another resident's hair, so, in effect, it looked like a good day.
I responded to "Do CAP!", with "I'm so glad you were able to meet me today. I was just going to take a stroll this way" (and I indicated to an arbitrary hallway). "Would you like to come?"
And you held out your hand. And I took it and placed it in the crook of my elbow. And we slowly walked around and around in the circle that is the locked memory unit. Is that a metaphor for the last part of your life? Walking the same circuitous paths over and over, seeing if there's something down this way you needed, wanted or thought you might possibly remember? It's hard to tell.
That first day, when I needed to leave, I said, "B. Thank you so much for spending time with me. I have another appointment, but I'll be back to visit with you soon." To this, you screwed up your face, stuck out your lip and angrily told me, in B. language, where I could go and what I could do with myself. Although I'd never be able to prove it, I truly believe you were asking why somebody else was more important than you at that moment. In fact, you were so angry, so inexplicably angry and snarly, that I turned to one of the CNA's, bewildered, and said softly, humbled, "I think I'm having some problems transitioning here."
And this CNA, who has shown me more patience than one should be asked to show a graduate student, smiled and said, "Just go."
So I started to walk away, and you said the only coherent thing of that day: "Where's she going?"
And the CNA said, "She'll be right back."
My task supervisor would later tell me that although it might feel disingenuous, it was better to focus your attention on a different worker and tell you just that. It seemed to work. You never remembered who I was, so you never held it over my head.
During a separate visit, you refused to wear shoes, but insisted on walking around anyway. Although it was your home, and I was always a firm believer of enforcing the idea that the common area was your living room, well. Come on, B. A locked memory unit is not the safest place to not wear shoes. You yelled at a different CNA when he put your slippers down before you. So I quietly slipped my own shoes off, walked away, came back and said, "Oh goodness, B! It's time for our walk! I need to put my shoes on for this. Hey! Here are yours! Do you want to put yours on?"
Lucky for me, you did.
We went on many strolls.
You were often so feisty it took every imaginative, calming idea to focus you otherwise (hence our many strolls).
You sometimes like to sit quietly in the common area, watching the Price Is Right, holding my hand.
You loved music.
You loved SINGING - word salad jingles. Catchy little tunes.
I learned to keep you away from your arch nemesis resident in the memory unit, but it never made sense to me how a person with no memory could single out the same resident again and again to pull her hair.
Have I mentioned how feisty you were?
Near the end you were agitated and restless
And that it when I loved you more.
As the Hospice nurse continued to increase your sedation, the more I knew your time was close.
A tiny bit of the feistiness started to give way to long, quiet looks into my eyes with a look in yours that was more meaningful than any prior.
Did you know?
I think you knew.
You were a pain.
And I miss you terribly.
Working with you was a head on collision of what I know about human nature, what I was learning in Mental Wellness and Aging, and my gut instinct -- a 3 vehicle pile up. You made me think long and hard about what it truly means to avoid infantizing somebody with advanced dementia, what it truly means to honor somebody's preferred sense of self, and how to honor the full life you had lead before this disease had ravaged your brain and the life you were living then. And you taught me about you - who you were, what you liked, what you did not like, and what mattered to you in those last days.
I always remember the firsts, B.
I always remember the firsts.