Sundowning

Sundowning, or sundown syndrome, is a common term used to refer to the agitation, anxiety and confusion that affects many Alzheimer's patients. It occurs later in the day and can continue into the night and even make sleeping difficult. My grandmother has not escaped this part of the disease. I try to keep my visits between ten a.m. and two p.m. Yesterday my visit, which included my mother and all three of my kids, began at four p.m. I knew this would not be easy.

I can remember the exact moment when I knew that my grandmother was in trouble. I remember the phone call when I felt like the wind had been knocked out of me. When I hung up the phone and cried and called my mother. It was one night in February, almost a year and a half ago, when I had called my grandma and asked her what she had for dinner. It was a common question for us, talking about meals and what we had cooked or would cook the next day. This time when I asked her what she had for dinner she said she didn't know. I was confused how she didn't know, she always ate at five thirty. She then asked me what time it was and I told her seven. Seven at night or seven in the morning, she asked. I felt a real sinking feeling. It's night time gram, I told her, you must have dozed off in the chair. I made light of it with her and immediately called my mom when we hung up.

Summertime makes my weekly visits become every two week visits, which is why I had to squeeze in a visit with my kids in the afternoon. She was disturbed by the noise the kids made and she was afraid they could get hurt if they ran in the hallway. I wore a dress and put my hair up but she didn't seem to notice. She was intent, as she always is, on brushing the kids' hair. She wasn't able to locate her brush and that upset her. She didn't want to see the movie showing after dinner because she claimed she'd already seen it (even though she didn't actually know what movie was playing, she was certain she'd seen it).

I left the nursing home feeling a little sad and defeated. And guilty. I get frustrated when she doesn't behave the way I want her to. Some of the other residents who always sit by the nurses station, tucked into their wheel chairs in homemade sweaters, are sweet and always smile at me when I come in. They sit together. I want that for her, rather than passing the hours and days sitting in her room alone doing jig saw puzzles. But it's not for me to decide how she lives what's left of her life. All I can do is keep showing up. And love her. That's it.

Next time I'll wear a ball gown

She didn't want to leave her room today. My usually offensive hair (long, wild, unbrushed) went unnoticed by her today, her focus shifting to my unforgivable choice in pants. Now in retrospective, I should have known better. These were text book 'grandma will hate these' pants: baggy, torn, faded, knees completely blown out, just hanging off me.  She took breaks from asking to brush my two year old son's hair to mention how terrible I looked.  I told her that she could brush my son's hair after she let me brush her hair, which she nodded would be fine.

We decided to go sit outside and she hemmed and hawed a little about leaving her room and my mother and I realized she was worried what the old ladies who lined the hallway would think, the ones who sat chatting quietly in their wheelchairs, waiting for it to be time for the next meal, the main activity at the nursing home. I teased her and promised that the next time I visited I would wear a ball gown. She smiled and laughed at me and my mother watched us, as she often does when my grandmother and I are together, quietly, taking it all in. She has been front and center for the magical relationship my grandmother and I have shared for the past three decades. She understands my pain in losing her to Alzheimers like no other person can. 

I want to turn back time and have it be the summer of '86 or '87, when my grandpa was still well enough to go the beach and my grandmother still smoked menthols and played cards with the neighbors and she fed me and bathed me and brushed my hair.  I want to go back to a time when she held my hand while we played cards, not because she needed to, but because an extra squeeze reminded me how much she loved. I want to sleep on her couch again, on cool sheets, as I hear her quietly snoring in the room next door.  I want to be ten years old again in her kitchen, peeling apple after apple, carefully piling the peels in a neat little mound, preparing pies for Thanksgiving.

When I look at her, I see who she is today, but also who she was, all those years and all of those things we did together.  I am so lucky, to have been taught how to play gin rummy by a champ and make a pie by a fantastic baker. So thankful for all she has taught me.

Victoria Newman

I know when she's about to say it. When she's been looking at me too long in silence and squints her eyes in confusion. I wait for it. Never really insulted, more amused by the conviction she has for her feelings.

'What have you done to your hair?'

She asks me this every time I visit her despite the fact that my hair has not changed very much in the past year. She is insistent that she does not like it.

'I don't understand. What color do you want it to be?'

When I was a kid we would watch 'The Young and Restless' and often my grandma would try and do my hair like one of the main characters on the show, Victoria Newman. It always turned out very nice but she pulled it so tight it was hard to blink my eyes. I was the only ten year old with a natural facelift.

In an effort to make the most of whatever time I have left with her brain, I have begun to dig deeper in our visits. Today for the first time I acknowledged to her that she does not remember stuff from three years ago, and that is okay. I suggested that maybe she remembers things better that happened twenty years ago.

So sitting there outside in the sun, my mom sitting on the grass with my son, my grandmother sitting across from me holding my hand, I asked her if she remembered visiting one of my restaurants a few years ago. She said she did not. Don't worry about it, I told her. What about going to the Jersey Shore, I said. Bakers Acres (the campground where we stayed)? John and Karla? Ginny and Gary? Deep sea fishing and beer and pizza? Yes, she said and smiled and squeezed my hand. Those were good times, she told me.

We talked about the cars she had with my grandfather (always Cadillacs) and I recited for her the colors: mint green, green leather interior (my favorite), gold with tan leather interior (the one she had when my grandpa died) and so on. We went over the colors of the rugs in all of the upstairs bedrooms before her house became two apartments. I took off the ring she gave me, the one my grandfather gave her for a wedding anniversary many, many moons ago, and slid it as far as it would go on her finger and watched her smile at it.

'Make sure the stones don't fall out' she told me. I asked her if they ever had. Well no, she said. I laughed. The ring is close to fifty years old. I think those stones are staying put I told her and gave her a big hug.

Missing her tonight and feeling the weight of it all, the sadness and the joy of watching her last chapter be written. Mostly though I just feel lucky, to have been there and have shared so much with her and now, when she falters and struggles to put together the pieces of a specific memory, I can be there to help her, to remind her of all the beauty that we've seen together.