I really wanted to know what the world looked like through dad’s eyes as his vision continued to worsen. At the donut shop one day we sat at a small table facing each other and I asked him, “Dad, tell me what you can see when you look at me.” He told me that most of what he saw was a silhouette…he really couldn’t see the features of my face any longer. I paused to ponder a world without all the spectacular details that it held for us…but somehow he had made peace with this. Whatever life tossed at him, he found a way to deal with it – he just kept on going.
Once when we were driving, he sneered from the passenger seat, “Don’t try it you son of a gun”, to a driver about to pull out of his driveway into our lane. “How could you see that guy,” I asked. He said he could still see out of the corner of his eye quite well, and he could – he’d caution me about bike riders or pedestrians. His eye doctor had told us it would go this way…even when he couldn’t see straight on, he’d still have his peripheral vision. When he first started back seat driving from the passenger seat, I’d bristle, falling into adolescent thoughts of, “Daaaaad, I KNOW how to drive”.
A bit of compassion began to develop in my heart after being wary of this man for much of my life. I remembered that he’d been driving since he was 10 or 11 years old. He’d told stories of “borrowing” his older brother’s car before he could even reach the pedals. He’d drive it around the block without permission when his brother was at work, sometimes leaving it in a slightly different position when he brought it back. He was young enough that he couldn’t figure out how his big brother knew he’d driven it. My father, almost 80 years later, had given up driving on his own accord, and what an enormous thing to give up, so he was still trying to contribute, to have some say, some purpose – it wasn’t at all about my driving, it was about his “not” driving and trying to find some use for himself. With the crazy behavior of LA drivers, it was good having another set of eyes, even if they could only see part of the story.
I walked into the kitchen one morning as he was organizing the refrigerator, carefully positioning each item after he determined its contents. He slid the milk away from the wall of the refrigerator, moved a bowl of leftover salad – which to my father had always meant a few pieces of iceberg lettuce without dressing – so it was not too close to a jar of mayonnaise. Watching him, I realized why he refused to keep much food in the refrigerator. With enough space around each object, he could “see” the silhouette and feel pretty confident that when he grabbed something he’d get what he thought he saw.
I’d taken to writing him notes because he’d begun to forget what I told him more often than he’d remember it. Where I’d gone or when I’d be home were crucial bits of information, and not knowing these caused him great anxiety. He was too proud to tell me that he couldn’t read my notes…but soon enough it became obvious. As I began to better understand the way that the world looked to him, I learned how to write notes that he could actually read. If I wrote large, thick black letters with a Sharpie marker, and with plenty of space around each letter, he could read a written note. Early on, it embarrassed him to have to read notes written with those big, huge letters, but eventually it was more important to be able to read the note than to worry about the fact that it looked like a page out of an elementary school printing lesson.
By the time that we had our last Thanksgiving meal at his home, the refrigerator was covered with these kinds of notes: one with emergency phone numbers, a list of doctors with a word or two describing what they helped him with, the numbers of his caregivers, the numbers for each of his three children. The ENTIRE refrigerator door was covered with these notes, each one using one or more 8-1/2 x 11 inch sheets of paper and I have to say, it did look insane. Being that dad and his siblings were neither shy, nor quiet, it was inevitable that one of our dinner guests was going to make a comment about the crazy refrigerator door as soon as they entered the kitchen. His younger sister walked in and the first thing out of her mouth was, “What the hell’s wrong with you? What are all those notes on the refrigerator?” My sister and I shrank to hear her speak to him that way…but we were both smart enough to stay out of the middle of their family drama.
My father’s increasingly limited vision, coupled with the dementia that was now becoming a more and more constant companion, caused changes in his eating habits. A few months after Thanksgiving, we had a smaller family gathering at dad’s house for his 93rd birthday. One of his caregivers made him a beautiful feast – an entire traditional Philippino birthday meal, including barbequed chicken and several noodle and vegetable dishes.
The problem was, he couldn’t see what was on his plate; the chicken had a nondescript shape and the rest was just piles of food to him. He’d had no luck with randomly jabbing at things with his fork. I watched him put it down and then he just dragged his fingers around the plate until they ran into something, he’d grab it, give it a little squeeze to try and figure out what it was, then into his mouth it went. This was the first time I saw him pick up his food with his fingers. I completely understood that this was the best, most practical solution that he could come up with – and he was a very practical man – but I knew this was not going to go over well with his brother and sister, aged 91 and 86. Unfortunately my aunt, who was his baby sister, was sitting right next to dad, and she reacted to him like he was a toddler. Before she could stop herself she slapped his hand and chided, “Don’t eat with your hands! Use a fork!” There had to be some kind of grace present with us at that meal, because luckily dad didn’t haul off and slap her back, instead he just laughed at her, and at himself, and kept using his fingers. “Wow”, I thought, “We are definitely in some new territory here.”
Dad and I were learning our way around each other. I joined him in the living room after returning from my morning walk, wearing a pair of pants that I loved. I thought they were beautiful and they were so comfortable. Sewn out of a rayon batik fabric, they were loose and flowing, with large flowers scattered all over. Dad was sitting on the couch with his arms crossed, facing me. He took one look at me and shouted, “What HAPPENED to your pants?” I didn’t know what he was talking about at first but I knew there was an insult in there somewhere. I looked at him and his whole body was quaking because he was trying so hard not to laugh. “I THOUGHT YOU COULD ONLY SEE SILHOUETTES?” I threw back at him. “Oh I can see THOSE pants just fine…WHAT HAPPENED to them?” There he sat with his characteristic tight-lipped smirk, shoulders bouncing up and down as he tried to hold back his laughter. We had arrived at a good place. Instead of taking it personally I could laugh with him as I imagined how they appeared with his vision; big, baggy pants with very large, dark blotches. By this time he’d had more than a few bathroom emergencies where he’d gotten there just a little too late…he was probably relieved to think that he wasn’t the only one. So what else would he say?