Summer’s beauty has reached its peak. The butterflies are back but Mom can’t see them now. I think of driving her to the beach so she can smell the ocean one more time. But routine is her great comfort, so a trip might be too much. I must look for new ways to communicate the joys of summer before they vanish.
Mom’s vision is almost gone, but she still perceives color. I take her to a garden where giant scarlet blooms wave down at her. She loves these flowers so I pull the branches close to her hands. Her language skills are weak but she still knows enough words to tell me they are pretty.
With the blindness advancing, her sense of hearing seems more acute. Birds in this garden are always bickering. The crows want a bigger share of everything and the sparrows always feel slighted. While they complain about each other, I whistle back. Mom laughs when they mock me and go on with their argument.
Walking was easy for her even as the disease advanced. But now her gait is wobbly and I must steady her all the time. Even in this state, she loves the slow stroll from tree to tree and the blurry sight of clouds that fray to let the blue sky through. After circling the path a few times, she sits down.
This kind of simple sensory stimulation seems to help her. But the best way to break dementia’s communication barrier is by offering her a bit of summer on a fork. It’s pink and juicy and carries the seeds of picnic memories. A smile breaks across her face and I know she is happy in this moment. Nothing summarizes summer like the sweet taste of watermelon.
It’s been over two years since dementia made it unsafe for Mom to live alone. After we moved her into my house, I avoided going to hers. The sight of her carefully arranged things filled me with grief. But now our family needs to rent her property to help pay for her care. Cleaning out the rooms is tough. Notes on her desk, her shoes in a row — every inch of the place bears sad reminders of the woman she once was.
The ties between us never frayed as her disease progressed. I’ve witnessed her loss of skills and — from close range — I’ve watched the transformation of her personality. With such focus on her growing frailty, I had forgotten what she was like just six or seven years ago when she still mailed birthday cards like clockwork.
Walking through her old bedroom, I cried while reading short reminders she’d written to herself. My mom was such a diligent person. She cared about small details in a way that amazes me. I’m random, energetic and impulsive. Things always get done, but I rarely plan and execute projects with her kind of precision. This was one of those personality differences that made us get annoyed with each other.
As I looked around her little office the other night, I couldn’t feel anything but admiration for the way she managed her life. She was so careful and attentive. The walls were lined with tokens of love from her many friends. Smiling photos, silly cards. It’s the stuff we can’t look away from when we sift through the remains of her life — that’s who she was.
We are so lucky that we still have her. Light shines through those eyes even as we feed her soup and comb her hair. Her love is the one thing we hold onto while the woman she was retreats to memory. Sometimes it hurts to be the steward of her past as well as my own, but it’s part of the caregiver’s job. And I guess that’s now who I am.