He has good days and bad days, and today was bad. I could tell as soon as I saw him. It seemed like his wheelchair was swallowing him. He was leaning over, kind of sinking into the chair and looking at the floor. I walked over and placed my hand on his shoulder.
“Hi Dad.” I said. “How are you doing?”
He recognizes me, but there’s no light in his eyes. “I’m ok now, but this morning was bad,” he says.
I wheel him to a private area and ask him what happened. He struggles to get the words out. I wait, willing myself not to help him, but doing so anyway. I begin listing common things it might be. Was he feeling sick, did he sleep well, was breakfast bad—
“No coffee!” he says.
“You couldn’t get coffee at breakfast? How come?” I ask.
“They wouldn’t give it to me!”
“What? That doesn’t make sense, Dad. Why wouldn’t they give it to you?” I say.
“You don’t know what it’s like here. These people… how they are. They’re horrible. I’m going to catch hell now for telling you.” he says.
As our talk continued, my father became agitated. He said the staff were “all liars” who were mean to the people there. It was his job to protect other people because they were all in bad shape. Yet the workers wouldn’t listen to him.
“Dad, I know you want to help people and that’s a good thing, but maybe you should just focus on yourself. There are staff members here to help the other residents. It isn’t your responsibility so I don’t want you to worry about it.”
“Yes it is! It is my job! They pay me to do it!” he says.
My heart sinks. I can hear the tremor in my dad’s voice, see the anxiety on his face. In this moment, his burden becomes clear. It’s like a huge boulder is resting on his lap, pinning him to his chair. I sense his slight frame collapsing under the pressure, so I plunge blindly, stupidly ahead.
“Dad, you’re not working here. We’re paying for you to live here.” As soon as the words came out of my mouth, I want to take them back.
“Yes I am! It’s my job! I knew you wouldn’t believe me! You never believe me!” His voice shakes and he grips the sides of his chair.
My father has Lewy Body dementia and I’ve been caring for him for five years, yet I’d just made a rookie mistake: I tried to reason with him. I used facts and logic on someone who is not in his right mind—who is living in a world of his own creation. A world I can’t enter or understand.
It’s a dark, frightening world filled with bad people who want to hurt him. Who want to hurt his friends. He has to protect them because there is no one else to help them. The people in charge—the big shots—know this. They are out to get him.
It takes me a few minutes to calm him down. He tells me they won’t give him coffee because they don’t like him. They are also locking him out of his room. “I probably won’t get lunch today either,” he says.
“I’ll make sure you get lunch, Dad,” I say. “I just went to your room and the door is open. You can go in there anytime. But I’m going downstairs to talk to the manager about the coffee and your room and everything else you told me.”
“Thank you, baby,” he says. “I love you.” I wheel him to the dining room and kiss him goodbye.
Over the next hour, I meet first with the general manager and then the director of nursing. I share my concerns about what my father said. I tell the nursing director that when I went into the kitchen to get my father a cup of coffee, the two staff member weren’t courteous or friendly. They were sitting at the table looking at their phones. When I asked if my dad had gotten coffee earlier, one of the women rolled her eyes. “He got coffee,” she said, her voice flat.
I asked if he could have another cup. Remaining seated, she pointed at a pot across the room. “Over there,” she said.
“Is it fresh?” I asked.
“I don’t know. It’s in a thermos.” she said. The other woman looked at her phone.
They both remained at the table, gesturing when I asked for a cup, sugar, cream, a spoon. Their irritation clung to me like a film.
“If that’s the way they treated my dad,” I told the nursing director, “then I understand why he feels dismissed.”
“That is not acceptable,” she said. “I will speak to them.”
I told her I understood paranoia and delusions were symptoms of my father’s disease, but I didn’t want to just dismiss his concerns because some of them were probably real.
“I’ve read that’s how people at these homes get abused,” I said. “Everyone assumes they’re delusional and ignores them when they speak up. I don’t want to do that with my father. The hardest thing is discerning what is real and what isn’t.”
The nursing director said she understood and agreed. She said my dad had become attached to a woman at the residence. Her family was worried because he was a little possessive of her. He also seemed to think he was an advocate for the other residents, so he’d sometimes question staff members.
“The other day one of the caregivers brought his friend a Coke,” she said. “He told the staff member his friend was diabetic and asked if it was a Diet Coke.”
I described my father’s background. For nearly 60 years, he was married to an abusive woman who demanded he wait on her. He was treated like an indentured servant.
“It’s all he knows,” I said. “Wherever he goes, he latches onto someone and puts her needs first, as he did my mother. There’ve been a few women at other facilities.”
The nursing director was kind and understanding. She said all the right things, gave me her cell number and encouraged me to call or text anytime. She walked me to the door and hugged me goodbye. I saw compassion in her eyes… and pity. She said she’d be calling me soon to arrange a family meeting with them and the hospice staff.
As I walked to my car, I told myself I’d handled things appropriately. I was staying on top of things to make sure my father received the best care. A few days ago, he was fine and happy. Today had just been a bad day.
But driving out of the parking lot, a heaviness overtook me. I felt blanketed by defeat, smothered by despair. Stark words fired in my head like bullets.. This is what happens with this disease. You can only delay the inevitable, not stop it. It will only get worse!
I thought about my father, my sweet dad, and how it must be for him. What it must feel like to slowly lose your mind. Is he aware of it? Can he tell what is happening to him?
If healing isn’t going to happen and I can only ask the Lord one thing, it would be this: please don’t let my father know. It’s bad enough that I know. It would be excruciating for him to know too. Please Lord… if there is any grace with this disease, keep the knowledge with me. Spare my father.