Saturday, April 8, 2017

When Your Dad has Alzheimer's . . .

You watch him deteriorate with a mixture of sadness and frustration. But there is also fear. It's a fear that permeates every bone of your body, and after he's gone, that fear slips to the background, rearing its head now and then. A forgotten name, a missed appointment, lost car keys . . . that's normal, right? But as you age, you count the years between you and that deadline, the one in which you surmise it all began for him   . . . but nobody is really sure when exactly it did begin. After he passes away at the age of 79, mom tells you it was a 20-year disease. He hid it from us all, she says. And I understand this now. Yes, he probably did.

It was very hard for mom to watch him slip into oblivion. She brought him back to Long Island from their home in Florida, hoping to remain, but instead, it turned into a short visit. During that time, dad was hospitalized for a fall he'd taken at my brother's house. By then, he'd already lost most of his ability to communicate. He was often confused and agitated. It was my turn to stay overnight with him at the hospital. When I got there to relieve my sister-in-law, his wrists were tied to the bed to keep him in it. Her face was ashen and she said, "The nurse did it." I took some small scissors from my purse and cut the ties. His hands were free. I quickly reached into my bag and pulled out a salami sandwich. I unwrapped it and put it in his hand. He smiled and began to eat.
But he refused to stay in bed. He got up and walked around and I walked with him, and the nursing staff gently tried to suggest he shouldn't be walking around. I wish I knew the name of that one nurse who came up to us as we shuffled along the corridor. It was way after midnight and she said, "he likes to walk, doesn't he? Okay, then let's walk." And she took his other arm and began to sing, I was walking in the park one day. . .  And dad began to sing along with her. He seemed happy for a few minutes. But the usual agitation soon returned. I think he just wanted to go home . . . wherever that was. He began hitting and yelling and I tried to talk to him. "Please, dad."

But this wasn't really dad. It just looked like him.

With the help of a nurse, I got him into bed. He was angry. I was exhausted. The bedroom light was off. It was semi-dark. I started to sob as quietly as I could. Suddenly, dad's fidgeting stopped and he said with a perfect clarity, "Linda?" I held my breath for a moment and then managed a reply. "Yeah?"

"Are you okay?" he asked me as we both sat in the dark.

"Yes." I reached out and took his hand and then he was gone again. But he was there for a few seconds and he understood the pain I was in and he had tried to help. And that's the part that haunts me. How much of him was there when we thought he was gone? How much did he understand?

At that time, I was working as a speech pathologist. After I finished my teaching day, I'd visit home-bound patients. Without making a conscious decision, I found that the cases I'd take were those in which the patient could not communicate. I couldn't help dad, but maybe I could help someone else's father .  .  .

Among the Zinnias is a book in which I took my experience with my father and some of the situations I have found while working with adults with head injuries and funneled them into a story. With fiction, you have the power to change the world . . .  or at least your little piece of it.

Below is an excerpt from Among the Zinnias:

Cries of hunger rang out as the sea gulls circled the docked fishing boats in the harbor, lamenting the empty nets. Pastore di Capre sat on the chair that Giovanna had dragged from the kitchen to the hallway and placed outside the bathroom. She had originally pushed the chair next to the bathroom washbasin because she knew she needed as little distance as possible from the water in the sink to Pastore di Capre’s stubble on his chin. But then she wasn't able to navigate around the chair so she slid it into the hallway.
          The shaving soap was sitting on the bathroom counter, the sink full of water, the razor poised and ready beside the shaving soap. Giovanna looked at Pastore di Capre’s profile as he sat quietly in the chair, his hands in his lap. She should have done this before she’d helped him dress. If she dripped too much soap or water on the front of his shirt, he might catch cold. But the desire to have him look presentable, to try once more to shave his six-day-old white stubble and have him back as the clean-shaven, well-dressed man she knew—might actually have him looking worse if she dropped water and soap on him and then had to abandon the project before it was finished.
          Giovanna squeezed past the chair and went to the kitchen, grabbed a clean dishtowel and made her way back to Pastore di Capre in the hallway. She lifted his chin and began tucking the towel into the front of his shirt. It was something Pastore di Capre had done hundreds of times with a napkin so he felt the towel at his chin and gently pushed Giovanna’s hands away. Then he continued tucking the edges of the towel into the front of his shirt but he was worried about the table—the dining table—it wasn't in front of him when he took his fingers from his neck and went to lay them on the table. His hands fell to his lap and he smoothed them along his pant legs from the thigh to the knee several times.
           Giovanna stood for a moment and listened to the broken church bells ringing.
           She took a deep breath and said quietly, “Let’s get to it, then.”
          “Let’s,” Pastore di Capre smiled and met her eyes and he was there briefly, just long enough to give her hope.
          Giovanna stood in the doorway of the bathroom and reached for the shaving soap. She poured some in her hand and brought it to Pastore di Capre’s chin. Pastore opened his mouth like a baby bird waiting to be fed.
          Giovanna put her other hand under his chin and pushed his mouth closed.
          “Close your mouth, Pastore.”
          His teeth clinked together and his jaw became rigid. Then as Giovanna began to rub the soap onto his face, Pastore di Capre’s jaw began to move up and down as if he were chewing.
          “We’re shaving, Pastore. Shaving.” She reached into the bathroom and picked up the razor. She held it up for him to see. “Shaving. You see? Shaving.” But her hand would not stay steady. She felt small tremors running from her shoulder to her wrist and the razor felt as though it were made of iron.
          Pastore di Capre stopped chewing and reached for the razor. Giovanna pulled it from his reach and tilted his head back by placing one finger under his chin and her thumb at the side.
          “I’ll do it. Just keep your head up.”
          Her voice prompted him to look at her and she wasn't able to get a wrinkle-free stretch of neck. She was afraid she’d cut him. Maybe he could still do it himself. She took his hand and opened it. When Pastore di Capre felt the razor handle he closed his fingers around it and opened his mouth.
          “No!” Giovanna grabbed his wrist, “Close your mouth. You’re shaving.” She put one of her hands over his mouth and with the other began to navigate his hand with the razor to his cheek. But her hand was too weak. How was it that he was getting stronger and she weaker?
          Pastore di Capre had never in his life shaved while sitting in a chair with a napkin tucked into his shirt. He was more confused than ever. He saw the narrow hallway walls and knew he neither ate nor shaved in such a place. He tasted the soap and knew it belonged in the bathroom and the hand that was at his lips was trying to silence him.
          An enemy.
          Giovanna felt the teeth open before she realized what was happening and then they clamped down on her little finger like a wolf with a goat. And the hand with the razor came up and slashed at her face.

          The pitch and volume of her screams were sufficient to get him to open his mouth, as well as to bring Maria running through the front door within seconds. She was dressed in her Sunday dress, a black scarf tied under her chin but when she saw Giovanna’s eyebrow and the bridge of her nose, Maria quickly pulled the scarf off and held it to the side of Giovanna’s bloody face. . .

Independent authors often have quite a challenge in getting exposure for their work. I hope, dear reader, you will consider writing a review on Amazon or

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