Find Me: A Reflection on Friendship and Dementia

Today is the birthday of Emilou who died in 2008. I've shared her story in keynotes, concerts, and workshops and in two albums I recorded back in 2007 and 2010. Here's a story in her honor.

Find Me

By Kareen King

It was a typical morning in the world of long-term care. Residents were resting in their beds, situated in living areas watching television, observing people enter and exit, eating breakfast in the dining room, or interacting with staff. Kitchen aides were washing dishes and clearing tables. Caregivers were busy attending to residents’ needs. Therapists were helping residents achieve mobility. Hospice workers were supplying comfort to those who were dying. Department heads, preferably called support staff, were working from their laptops or working out care strategies or staffing issues, and so forth.

I had just arrived and was headed straight to my office, hoping not to be deterred by anything or anyone, because I thought I had a lot of urgent things to take care of. However, there was no way I could ignore the sight of Emilou who was seated in her wheelchair in the dining room, directly in my path, eagerly waiting for my arrival. As usual, she called for help, just after having finished her breakfast. I responded immediately, inviting her to a gathering for individuals who have dementia, in hopes the invitation would give her something to look forward and eliminate her need to call for help.

I went on to my office to check my laptop for staff communication and to look over plans for the day. Impatient, she called for help again, so I left my office and wheeled her around with me while I did errands, thinking I could kill two birds with one stone. I asked if she had any songs on her mind. Instantly, she started singing, “I’ve been working on the railroad,” and I joined her. We sang enthusiastically, moving from one favorite to the next including, “Let Me Call You Sweetheart,” “Jesus Loves Me,” "Take Me Out to the Ballgame," and “Hallelujah, I’m a Bum” to name a few. So far so good.

Eventually, in the spirit of camaraderie, Emilou asked for a drink.

“I want something good,” she requested.

I suspected that “something good” likely referred to her favorite drink, Pepsi. Yet, since I was in a hurry, I didn’t want to be inconvenienced with the additional effort required in servicing this special need. Instead I offered her ice water.

“No thanks,” she replied.

Knowing full well she probably wanted the soft drink that just the day before she referred to as the “drink that makes me quiver,” I took advantage of the fact she hadn’t specified her drink of choice. It hadn’t yet occurred to me that her request likely was an indication of the kinship she felt between us.

“What would you like to drink then, Emilou?”

“I don’t know. Whatever you’ll give me.”

That’s all I needed to proceed with my plan. I quickly prepared a cup of ice water, brought it to her, and offered her a sip.

“That’s not good,” she reacted, spraying both me and the floor with ice water. I was dumbstruck, having never been treated like this by her before.

“Emilou, you said you wanted a drink, so I brought you some ice water.”

“I wanted something good!” she shouted.

“So what do you want then, Emilou?”

“I want your nose. That’s what I want – your nose,” she lashed out. “I’m going away from you. You aren’t any good.”

Stinging from the outburst, I calmly attempted to justify my actions. “Emilou, you said you wanted something to drink and I asked you what you wanted. You said you’d take whatever I gave you, so I gave you ice water. So what is it you want?”

“Someone to be nice. You . . . they were so nice, but then they turned on me.”

It then dawned on me that I had just become the scapegoat for previous unpleasant encounters of her being dismissed or ignored. For example, it was once relayed to me that Emilou had been removed from another nursing home, years earlier, for flinging hot coffee on a caregiver. It was obvious that Emilou wouldn’t have attributed my selfish actions to the Kareen she had come to recognize as loving and trustworthy.

One of my coworkers gave me a knowing glance, coaching that it would be best if I gave her some space. She was soon rehearsing familiar phrases such as, “Help!” “I’m so beside myself,” I’m lost,” “I hurt.” Emilou, who had been sitting erect and eager, slowly sunk into herself as her volume diminished with each passing word.

What she spoke next stupefied me.

“I want you to find me,” she spoke feebly, back slumped and head facing the floor.

I walked toward her and invited her once again, with some trepidation, to the gathering I had invited her to earlier. She accepted, but not with the enthusiasm I had witnessed at my initial invitation. I brought her into the room to join her peers. By now, however, she looked like the typical “slumper” one might conclude as the by-product of negligence. Only this time, I was to blame. As she continued to complain of pain, I removed her from the gathering so the others could carry on without disruption.

I then returned her to her neighborhood where I re-encountered the coworker who had given me the knowing glance.

“This is what we experience from her every day,” she noted.

I went on to focus on the other residents, checking if there was anyone else who needed to be at our gathering. As I headed out for one last glance, I looked in on Emilou again because she was calling for help. This time, she accepted my invitation, and she and I returned to complete the number of attendees in our gathering.

The next 45 minutes were spent sharing ways in which we are lifted up or can lift up others. For the most part, Emilou’s head hung with her eyes closed. At one point when she lifted her head, I capitalized on the moment.

“What lifts you up, Emilou?” I asked.

“Being with someone who thinks they love me.”

After the gathering, Emilou accepted my invitation to join in our next activity, Movers & Shakers, an exercise group that featured creative rhythm and movement. I situated her, a bit more uplifted, in a new circle of individuals.

“I want you to hold my hand,” she declared.

I held her hand for a moment.

“I’m thirsty,” she added.

“What would you like to drink, Emilou?” I inquired.

“It doesn’t matter.”

“Would you like a glass of ice water?”

“Yes.”

I fetched her glass of ice water, pondering her change of mind. She took a sip from a straw.

“Oh, it’s good,” she stated. “I didn’t get it on ya, did I?”

“Oh, no, Emilou. You’re fine,” I reassured her. “Do you want another sip?”

She took another sip.

“I don’t want ya to get hurt,” she persisted.

I considered the profundity of the moment. Emilou, though forgetting details like names and places, hadn’t forgotten how others make her feel, or how she felt about herself after a combative episode. Emotions go much deeper than words – a curious phenomenon in the mysterious world of dementia. I was fascinated with Emilou’s subconscious awareness of the need to make restitution amidst the murky waters of time and place confusion.

And so, Emilou and I were friends again.

Happy birthday, Emilou.

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