The Face of Alzheimer’s

I’ve been dreaming about my Mom a lot lately. In one dream she was having trouble making a sandwich and instead of asking for help she just gave up. I discovered the bread and mustard and everything out and asked her if she had eaten and she replied “No! I couldn’t remember how to make one.” She was upset and I told her it was ok to ask for help. I sat with her and made it for her while she said “but I should have been able to do it.” And I said of course she should, and but that we all need help sometimes.

There was a lot more to the dream that I don’t remember – this was the part directly before I woke up. I remember how flustered she was in the dream and how she said she guessed she needed a “big sister” to do it for her. I am not a dream analyst and I have no idea what any of it means. But it’s the fact that I can talk to her in these dreams that make them so incredible. Obviously in this most recent dream she was at the forefront of Alzheimer’s. But she could still talk to me. In reality, and oh there’s a lot of stories I could tell, I remember the day she put the egg shells into a cupboard because she couldn’t remember what she was supposed to do with them. The utter confusion as she held the egg shells. My heart wrenching because I knew I could not tell her to put them in the trash can. Waiting until I could move the eggshells when she wasn’t looking.

If you want to know what Alzheimer’s looks like, look closely at my Mom’s face. She is the face of Alzheimer’s. This is the toll it takes. The vacant expression, the staring off into space – the listlessness and the leaning. Look at her eyes. She no longer sees the world around her, she can only rarely focus on anything. If she manages to look directly at me sometimes I’ll still get a smile. Mostly not. Maybe she’ll say a word or two to me, maybe she won’t. Today I showed her a picture of my Dad, all dressed up in his Army uniform standing in front of a flag. Who is this I ask, putting it carefully in her line of vision. Who is this? She glances at it before her eyes slide away. I don’t know she says clearly. You don’t know who this is? I ask again. She mutters uh-uh. Usually I don’t do this to her. I don’t ask the hard questions and I don’t try and make her remember.

But today I was curious. I set the picture down without another word and then I looked at her and said “Do you know me?” I asked it twice and she just looked away. No response. Nothing in her eyes. So I sat down and read to her, the storybooks she used to love. Where The Wild Things Are, Tikki Tikki Tembo, Strega Nona. I did all the voices and she was interested… I think. She didn’t try and look at the pictures. She didn’t watch me as I read. But she didn’t fall asleep either, so I’ll take that as a win. One of the care ladies stopped by and I think was sorry to have interrupted but I kind of wished she would have stayed and listened too. It made me have the idea to do a story time like my Mom used to do. So I messaged the Director and asked her if I could do this for the residents sometime.

The time before when I visited, Baby Girl was with me. We sat outside for awhile and decided that it was too hot so we took Mom inside, to her room. Baby Girl and I decided to “organize” Mom’s room. It’s always tidy but Baby Girl went through the postcards that Mom’s best friend Panchita sends weekly without fail and decided which to hang on the wall and the door. I went through Mom’s closet and found a ton of stuff to weed out. We thoroughly enjoyed ourselves and Mom sat and took it all in. She never said a word but her eyes were open the whole time and she did look around a lot. We talked and laughed anyway. Mom enjoys the commotion – she likes to listen to people chatter around her.

Thursday July 22 is Mom’s 76th birthday. The day before I am throwing a party for her. It’s going to have live music thanks to the Director of the facility, and grilled salmon and lovely potatoes thanks to some of the ladies that work there. I’ll bring the decorations and the cake and all of us, Tony included, are wearing purple to honor my Mom. All the residents and caregivers are invited. It’ll be a great day and I’m really looking forward to it. You might wonder why we would make all this effort for someone who will not know what is going on – but I tell you if I can make her feel the love that surrounds her then that is what I’m going to do. I’m going to celebrate the heck outta my Mom! She deserves a party. We all do. Alzheimer’s is an ass kicker for the entire family so Alzheimer’s awareness is the theme – purple and butterflies – because it needs a cure badly. Even some of her oldest friends are coming. Friends who I hope will understand that what they see is not the lady they knew, but that somewhere deep inside she still recognizes them.

I pray that I never have to be the face of Alzheimer’s like my Mom is. I pray that what she is suffering is not in vain – that if I can somehow make a difference that I will. I pray that my Baby Girl doesn’t have to go through this twice. That she’ll be around to see the cure. So give us hope on this day, this day of Alzheimer’s awareness. Thursday July 21st wear purple for my Mom and thank your lucky stars or your merciful God that your brain is healthy and strong.

Memories matter. And in this family, no one fights alone.