I was the one still in distress. I had learned that with Alzheimer’s, sometimes the caregiver suffers more than the patient.
By Marie Marley
Alzheimer's Reading Room
Things had been calm and tranquil for a while, but for my life partner, Ed, the quarterly care conference brought bad news. His decline from Alzheimer’s up to that point had been primarily in his mental state. At the conference they said his physical health was also deteriorating.
They told me he needed more nursing care, and sometime soon (“not immediately,” they stressed) he’d have to move to the Terrace, the next level down at the Alois Alzheimer Center, where he could receive more care and be in a quieter environment.
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This was serious. I was so upset that at one point I realized I was holding my breath.
I was blindsided a week later when Ann, the social worker, called. She told me a room had opened up in the Terrace and they wanted to move Ed in two days. In two days? But they had said the move wouldn’t be “immediate!” I wanted to protest, but I knew no protest in the world could stop the downward spiral.
The Terrace was the third lowest of their four units. In my mind this was a foreboding move and meant Ed had taken yet another step closer to the end. There was just one more step down, the Gardens, and not all residents lived long enough to make it there. I started referring to the Gardens as “the place where Alois Center patients go to die.”
“I want to go home,” Ed kept repeating plaintively to me and everyone who passed by during my visit the day of his move. He was sitting on a little padded bench outside his new room. He looked bewildered. I felt faint and terribly guilty. I felt as though I’d ripped him away from everything that had become familiar to him. From what he’d come to accept as his “home” in the Courtyard level.
I couldn’t begin to imagine how confused and lost he must be feeling, and there was nothing I could do to make it better. Seeing my tearful state, Janelle, the Terrace aide who would soon become my favorite, looked at me with compassion, squeezed my hand and said, “He’ll be okay. You’ll see.”
On my way home, instead of turning onto my street, I kept driving up to the corner, where I ducked into a convenience store and bought a pack of Salems. Then I headed home. The first thing I did was smoke one. The second was break all the others into pieces and flush them down the toilet.
“I am not a smoker anymore,” I said to myself.
The instant I woke up the next morning I heard Ed’s melancholy voice in my head, repeating over and over, “I want to go home.” I burst into tears.
A little later I drove to Alois with a new stuffed animal – Ed loved getting new stuffed animals. I was hoping it might bring him some comfort.
I ran into Janelle outside Ed’s new room.
“How’s he doing today?” I asked, expecting the worst.
“Oh, he’s fine,” she said with a little laugh. “He stopped asking to go home.”
“He what?” I asked, stupefied.
Nothing’s changed. He’s in a real good mood this morning,” she said, eyes twinkling. “Go in and see for yourself!”
I stopped and let her statements sink in.
“Yes. It’s often like that,” she said. “Residents often adjust to changes more easily than their loved ones.”
“Ann told me that, too,” I said, exhaling forcefully and leaning against the wall. “I guess that may be one of the benefits of dementia. You quickly forget painful things that happen to you,” I said, mostly to myself.
Nonetheless, even though Ed had forgotten about the move, the sound of his voice begging to go home reverberated in my head and troubled me for days. I was the one still in distress. I had learned that with Alzheimer’s, sometimes the caregiver suffers more than the patient.
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Come Back Early Today:
A Memoir of Love, Alzheimer's and Joy
Marie Marley, PhD, is the award award winning author of, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. You can visit Marie’s website at ComeBackEarlyToday.
A different version of this article was published on the Huffington Post.
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