There are times when Dr. Amanda Mullen’s visage takes on that of a lion tamer about to open the locked gate to the ring where the lions are gathered for them to be put through their traces; or, the look of a guide in Denali National Park on a trail in brown bear country, with an air of utter respect but also with an eye on possible danger. Dr. Mullen is sitting across from me as I recount how I have been blindsided. I tend to be a scrupulous planner, especially when I take Tevis on a day trip, and most of our day trips lead us to Bellows Falls, Vermont and Village Square, where we have made many friends among the proprietors of the shops there. However, this was not an ordinary day, as the dialogue ensued points out.
Of all days, driving on a beautiful early spring day in Vermont, we have a crisis. Tevis thought, as I passed Exit 2, the second Brattleboro exit on I-91, that I missed the exit we needed to take.
“This is where my friends live,” Tevis said.
“No,” I said. “They live in Bellows Falls.”
Tevis, again: “I want to see my friends and you missed the exit.”
I tried to explain. Then we neared Putney, Exist 4. “We’re going too far up,” Tevis said, “I don’t want to see my brother.”
I said that I’d never really drive her up to see her brother without her asking me to take her to see him. “Besides, he lives in Maine,” I said.
“I want to go home,” Tevis said.
We neared Exit 5, the southerly route for Bellows Falls, through Westminster.
“I want to see my friends in Brattleboro,” Tevis kept repeating.
“They’re in Bellows Falls,” I said, quietly. . . . We reached Exit 6, Bellows Falls. Tevis said, “I want you to turn around and bring me home. I don’t have friends in Bellows Falls.”
I reached boiling point, and shouted, “I can’t take this anymore!”
After my recounting of my being blindsided, Dr. Mullen leaned over across from me on the other side of the coffee table between us and peered into me. She is a disciplined woman, a consummate and wise professional, whom I believe enters our lives modestly but with an activated fourth chakra, an active heart of compassion. She said, “When I look at you, I see that you are full of fatigue and grief.”
I didn’t disagree with that.
She spoke again, “You’re trying too hard. You need to tolerate annoyances. You want to stop the disease.” She paused. She looked away from my eyes momentarily to look askance, as if she may have looked into the very eyes of the beast that Alzheimer’s disease is, and drew up the gold of truth from the depth of her observations about me. “You want to stop the disease. You can’t stop the disease. There is no stopping the disease.”
She refocused on me, “I want you to not try to stop the disease. I want you to walk beside Tevis, until she has no more time left.”
She continued, “Only answer the question she is asking, no more. Get out of the loop. It is easier. Feel Tevis. Feel where Tevis is. Tevis only has feelings left. She doesn’t have very much memory left. Check in on her. That is all that matters now. If she becomes upset about one of the things that upsets her, ask: “Can I give you a hug.”
“Slow the train. Get on board,” she advised, like the sister I might have always listened to if I had a sister such as her.
“Remember,” she admonished, “if a phone call with someone in the family doesn’t go well for her, and her amygdala has gone into flight or fight mode, step in, and say, ‘I’m so sorry, Tevis, may I give you a hug.’”
Being blindsided in caregiving is a given. It is an intrinsic part of the landscape of caregiving. Being blindsided is not anything that will stop. It is one with the Alzheimer’s disease. One can succeed one day but don’t count on success the next by using the same method, since the disease is degenerative, and in Tevis’s case the disease has accelerated in ravaging her brain, in robbing her mind of memories, in negating the incisively sharp cognitive mind she once had.
Many people have no idea that the disease changes daily and all during the day. It is a disease that is monstrous in ways we didn’t really know before. We need to develop a kind of spiritual athleticism—an utterly new psychology and vital flexibility to possibly stem its tide.
Being blindsided is a part of a caregiver’s day-to-day reality. A caregiver can prepare from one day to the next and do whatever it may take to guide the Alzheimer’s disease sufferer through one hour to the next but what is learned in one day doesn’t suit what may come up in the next.
Being blindsided is jarring emotionally. The experience sets the caregiver back on their heels, whereas you may have just meditated with the Alzheimer’s sufferer but that doesn’t necessitate peace since moments later the Alzheimer’s sufferer may say there are other people in the house, they may even disassociate and relay false stories, they may say they just spoke with a family member whom you loathe because you know that family member only wants the money that the Alzheimer’s sufferer has in her bank account.
Dr. Mullen leaned toward me again. “Your strength is your writing. Your strength is in the eloquence of that. You and Tevis shared that. She understood you and you understood her. Your strength doesn’t matter here—with Alzheimer’s disease,” she stated simply, without decorum, but in her normal way, which is downplayed, but rich in wisdom.
“You have to learn how to diffuse a situation . . . with a smile,” she emphasized.
“If Tevis asks,” she continued, “Where’s Wally,” just say, “Let me see if I can go and find him. Why don’t you just sit down while I do?”
A week after she made this suggestion, Tevis pushed open the louvered doors in the kitchen, and asked me, “Where is everybody? Is everyone coming down for dinner?”
I said, “Tevis, there isn’t anyone else here but you and myself.”
“Oh,” she said, “but have you seen Wally?”
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