Mark posted to Ann’s writers’ blog every other day or so. Mark understood why Ann loved the group so dearly. They were amazingly supportive, giving Mark small pieces of advise on how to edit Ann’s work, encouraging him to leave some of her phrases and expressions, even if they weren’t necessarily standard English. And the support they gave him, as a carer, was incredible. Some of them had experience with dementia in their families and they often ended their comments with an encouraging word for him.
Slowly Ann’s writing became complete gibberish and Mark stopped publishing her thoughts. He continued to find posts from readers and blog-mates, and he’d answer them the best he could. One person suggested that he take over the blog and write about his experiences, but Mark couldn’t bring himself to do it. Not now. Maybe not ever. It would feel too much like taking away something which belonged to her.
Then one day Ann ignored the computer all together. She never went back. Mark was finding it more and more frustrating to work out what Ann wanted. She’d grunt with determination and look at Mark expectantly. Often he was at a loss as to what she wanted, then she would cry or have a minor tantrum. Mark was usually able to calm her down. He would take her in his arms and hold her head close to his, rocking and singing one of her favourite hymns. Music seemed to keep Ann positive. Her favourite pieces were Handel’s Water Music and Pachelbel’s Canon. She wanted to listen to them over and over again. Usually she would sit staring at her hands in her lap for hours.
Ethan came home as often as he could. Ann would gaze at him and blink numerous times. He tried to speak to Ann as he always had, pretending, in a sense, like nothing had changed. She would sit rocking, looking out the window, and Ethan would ramble on about his research and his new flat and funny stories about his friends. Periodically Ann would stop rocking, look at him as if seeing him for the first time, and smile. Ethan lived for those smiles. They reminded him of his childhood and his most buoyant mom. However, he always went away feeling profoundly sad and exhausted. He marvelled at Mark’s fortitude.
Bruce came to visit less frequently until he stopped coming altogether. He’d call Mark once in a while to give him news, but never asked about his mother. Mark knew it wasn’t because he didn’t love Ann; he loved her tremendously. It just hurt too much to have to deal with the disease. Beth called every weekend and would chat for a long time, asking Mark how he was doing, enquiring after Ann.
Luke started coming over four times a week — Tuesday evenings while Mark was at his support group, Thursday afternoons, Saturday and Monday mornings, just to give Mark a chance to go out and clear his head. And sometimes he just dropped by on a whim. One Tuesday night when Mark got home after a particularly difficult support group meeting, Luke greeted him with freshly brewed coffee. Ann had gone to bed very early, leaving Luke to read and think. Mark was grateful for the company. The thought of spending the rest of the evening alone was depressing.
The two men, brought together by a woman they both loved, sat in silence for a while as they sipped their coffee. Mark, staring at a stain on the carpet where Ann had dropped a glass of juice, spoke first. “This has got to be the closest thing to hell on Earth.”
Luke did what he always did when he didn’t know what to say, he stayed silent and listened.
“I am so tired, Luke. I am just so damned tired.” Mark put his coffee down on the table before him and rubbed his hands over his face. Then he sat back, slumped into the couch. “And I am lonely.” He looked over at his friend, tears welling in his eyes. He blinked several times and took a deep breath. “I miss her, Luke! I miss her so much it feels like my heart has been ripped out of my body.” Tears spilled down his cheeks, but Mark ignored them. He didn’t have the strength to wipe them away. “And I have to look at her every day. Only it’s not her. Or it’s her, but buried so deep somewhere I can’t touch her. God, I feel so guilty, Luke, but sometimes I just wish she’d died, you know? But the minute I feel that way I know I can’t let go. I can’t lose her. There are days when she smiles at me,” he looked at Luke again, “– you know that smile — ,” Luke grinned and nodded, “and I swear I’d jump in front of a moving train for her. But right now I just feel so alone.” Mark stared into the space in front of him.
“What about the support group?” Luke asked.
“It’s okay. The people there know how I feel. But they are all dealing with crap. Most of them are worse off than I am, and I feel bad for moaning.” Mark sighed and wiped his face with his hands. “It’s everything, you know. I feel cut off. All our friends, well, they’re different now. They don’t call or pop over. When I meet them they don’t look at me the way they used to.
“Some people seem to feed on what’s happening to us. It gives them something juicy to talk about at their next book club. I can just hear them, ‘Oh, that poor Mark,‘ ‘Oh, poor Ann!‘ And I detest them for it.
“Others are sincere, but they don’t know what to say. I can see them trying to decide whether or not they will mention Ann when they greet me. I hate it when they do. But I hate it just as much when they don’t.
“And others avoid me like the plague. They don’t think I see them turning around and going down another aisle of the market to steer clear of me. It makes me feel like I have some contagious disease. Like I am a leper and should go around shouting, ‘Dementia!’”
Mark shook his head. “Nobody told me about the isolation. I could bear it if I had Ann. We used to say that we could weather anything together. I need her so much! I can’t do this without her!”
Mark looked at Luke and was almost shouting now. “I need Ann, damn it! Where the hell is Ann?”