Some days I just flat out fail. Miserably and epically. Some days I get very little accomplished. Some days are epic in their enjoyment and successes. There don’t seem to be any of the other days where we are all smiles and we coast through until dinner time, and then bed. And it is exhausting. My head feels like it is on a swivel, because I am changing gears so quickly. And so often.
I look towards my kitchen, see my accents of purple, and I smile. I have adopted the color purple in my life pretty heavily. It sort of all came together when my mom was first diagnosed with Alzheimer’s and I realized it was the color of the movement. Then I saw an article about the Red Hat ladies, who wear purple clothing with red hats. I loved their attitude. Not the red hat part, but their attitude and the purple color. I saw some flowers I fell in love with that were purple, and so in our yard, we have all green trees and plants, with purple flowers. An entire flowerbed with nothing but purple iris. It looks amazing in bloom.
I wear a lot of purple. I have a purple key chain I had made at a craft fair, and I carry a purple purse, hand-knit. (It is so cool). My flip flops, bathrobe, and nightgown are purple. My husband is awesome because he does not complain. Ha-Ha. My first tattoo is all purple ink, and is a Jerusalem Cross. My second tattoo is the Alaskan Forget-Me-Not flower and 4 hearts among some wandering vines. All but the petals of the flower are purple with the flower petals a light blue. The hearts are for my two parents, my brother, and me. All in purple!
So what does this have to do with good days and bad days? I am working through it, but it made me think about focal points. And what we focus on, and what we have to let go. When I was preparing for my first son to be born, a lamaze class instructor told us to find something we could bring for labor and delivery to focus on. I could not find a thing I wanted to stare at. (It ended up I never got to use it, anyway…another story). And one of the things they talked about in the labor class is that focusing on something outside of where we are and what we are doing allows us to maintain our calm. With dealing as a caretaker for my mom, I have been searching for something like this. I have post it notes on my mirrors. They have pithy sayings on them relating to Alzheimer’s. But they don’t do me much good when I am not in the bathroom. LOL. So I came up with a plan. I have little purple things all over my house. And when I alight my gaze on them, it reminds me to take a deep breath, this is only a moment, and to move on. I plant my house plants in purple pots. I have little a little purple bowl next to where I sit in the living room. My phone has a purple case on it, as does my laptop. I usually have a purple piece of clothing on. I place purple wherever I can, for me.
So for those who struggle with this caregiving task we have taken on, I have a suggestion. Find something that helps you find your peace, your core, your center. And cling to it. Put little focal points around you that help you to cling to that core of peace in amongst the chaos that is Alzheimer’s disease. It is like entering that swirling vortex every, single day. We choose to help our loved ones as they journey in an ever-increasingly confusing landscape. They are lost. Sometimes they look around and have no one or nothing that is familiar. My mom was laying sideways on the couch, snoring. Then she started talking in her sleep. Laughing. Smiling. Talking. All while asleep. She woke up, looked at me, and went back to sleep. She was looking for her anchor in this world. And that is me. I am her something purple in this insanity of Alzheimer’s. And when she absolutely drives me crazy and I walk out, slamming doors as I go, I try to remind myself she is clinging hard to a past because she has no idea what today is all about. And I am the single thing in her life that keeps her grounded. And that is why I am who she lashes out at – I am the only person she really knows anymore. Her Care Coordinator reminded me, gently, that mom is pretty much residing in a world from more than 60 years ago. Today is something she has to get through, but she lives in the 1940s. She has no recollection of life before this house in Alaska in 2018, unless we go back to before 1953 and when she moved to the USA. When her Care Coordinator asked her where she moved from, she said she was living in New Zealand and I invited her to come here, so she did. Oh, mom. She made up a story that fit with the way her mind was working at that particular moment. She forgot she has lived in the USA all these years (almost 65 years). She forgot my entire childhood. But she knew she was connected to me. I was her purple, her anchor, in that moment. God bless her. This journey is so hard. She hurts me almost daily. She is nasty almost daily. She is stubborn every day. She will only do what she chooses to do, every day. And she usually wakes up with, “Damn. I woke up again.” Because mom is done. She does not like her life. She wants to be with Frank, my stepdad who passed away more than 6 years ago.
So for me, I cling to my little spots of purple in my world. It helps me find my peace when it can be shattered, almost by the hour. It reminds me I am living in service to another. It reminds me that my world is really part of an inherently intimate world within my mom’s Alzheimer’s – her disease runs our days. So some days fly by with delight and joy, and others are weighed down by one disastrous moment after another. But the days pass. And soon purple will be the color of remembrance of these days.
“I thank my God in all my remembrance of you…” Philippians 1:3