I spent a large block of time on the phone with my Seeser this morning. She and I have always been very close. We call ourselves the nine-apart twins. We look and act like twins but are nine years, nine months, and nine days apart in the birthing order of our siblings. We feel each other although miles separate us. I can sense when something is amiss with her and vice versa. She traveled out here the day after I received the diagnosis of Early-onset Alzheimer’s without knowing anything about the appointment. We just know. She was with me as my hubby and I told our children and she and her husband were a much needed strength and support to all of us.
So this morning, we talked about all the E-oA changes going on and she asked what it has been like for me to see, experience, feel, what is going on in my brain. I had never been asked that question. I have shared from time to time about the frustration, anger, sadness, but not putting needed words or pictures to those feelings and experiences. Let me first give you a snapshot, thumbnail so to speak, of the woman I was a few years ago.
My mother seemed to all to be the Perfect Minister’s Wife. She truly was the proper noun all the time. So, when I married, much to everyone’s surprise, a minister, I had a very high bar set before me. I wore my hair in the perfect do. I made or purchased perfect attire. I knew when to wear heels or flats, and when to carry a handbag or a clutch. I kept my home spotless, 24/7. Everything had a place and was always in its place! I could hold delightful conversations, set an elegant table and orchestrate a 7 course meal including an aperitif, appetizer, salad, main course, dessert, and delightful cup of coffee! I could not function otherwise. I sang perfectly, sat perfectly, never, ever hurried, and knew how to pose for perfect pictures when needed. I hand~wrote invitations, thank you notes and introduced folks in perfect order.
I never shared anyone’s business with another, and still do not! I knew how to be polite and never ask rude questions. I knew how to respond perfectly if someone asked me a rude question. Laugh gently and say, “My dear, I will forgive you for asking if you forgive me for not answering”, and laugh gently again. I knew when to leave before outstaying my welcome and to sweetly end an evening in my home so others didn’t feel rushed or pushed aside. I knew how to make up a welcoming, comfortable guest room to make a home-away-from-home for our visitors.
I could plan and execute huge fund-raising dinners for the church and create an entertaining dining experience for anyone who purchased a ticket. Church Banquets? Just tell me how many and I could come up with the theme, menu, skits, whatever the heart desired. Perfect every single time. I knew which utensils to use when dining out, to chew with my mouth closed, never speak with food in my mouth, to keep the napkin in my lap until finished with dinner and then fold it and lay it across my plate when done, to keep elbows off the table and tip generously.
I raised three children who practiced their manners, respected the elders in their lives, and knew their Bibles well. They picked up after themselves, dressed appropriately and gave and give the most heart-warming hugs. They are to this day truly amazing adults. I am completely blessed by them and they are my joys!
Ann Landers, Dear Abby, American Etiquette and Rules of Politeness, and Emily Post could have used me as their poster person for proper etiquette. I was the emoticon of decorum. The hands in lovely white lace gloves would have been the picture of my life.
But then, Early-onset Alzheimer’s paid me a visit one day and refused to leave. No amount of rules learned over the years could help me. It was never going to excuse itself for the mess it made, pay for the damages it had done or depart my body. It was the most chaotic guest and I could not throw it out! It was never going to leave. Ever. So what to do now?
After much research and my day to day issues, we knew my short term memories were fading fast. If I have a convo today and do not take notes immediately after, I will only be able to give you a basic sketch tomorrow and by next week, I may not remember that we even talked about something. I think my husband is buying me a new Keurig Coffee Maker every day, but no. They took pictures of each step and wrote instructions on the pictures so I can make my coffee in the morning.
Alexa tells me when to take my meds. Five minutes later my phone and watch tell me to take my meds. A little after that my hubby texts to see if I took my meds. I think I have but when someone drops by and checks? Meds still in the container. I now have a flying saucer on my island that yells at me and doesn’t stop squeaking, beeping, vibrating, lighting up until I take that dose of medicine. She is so annoying, I doubt I miss another dose. I am thankful that God has given me family who watch over me and keep me secure and safe.
I never have to answer the doorbell or open the door. I don’t have the filter to alert me when it might be someone I do not know and therefore should not allow them in my house. My husband gets an alert on his phone, no matter where he is, when someone comes to my door, can see on the video who it is, unlock the door for them, and tell them to come on in the house. He can also activate the alarm that notifies the police if someone should ever try to come in that we don’t know. Thank God for technology.
I am losing more memory every single day. Some days, it is a lot and some days, it is bits here and there. While talking to my Seeser I realized a few things, but the most important is how I now manage my time. Things like cleaning and cooking and being neat and orderly have no place in my life now. I have kind of become a fly by the seat of my pants gal. If it doesn’t get done? Who cares? Me? Nada. I sincerely could not care less if I actually tried!
I wear what I like. I do my hair how I like. I love sparkle. Always have. But in the Before E-oA, I would not have chosen to be liberal with those sparkles. Now? The more the better! I like them and enjoy wearing them. I love the kaleidoscope of color that bursts from their brilliance when the light catches and reflects just right. Sparkles make me happy! Color makes me happy. No more subdued earth tones for me. Well, unless it’s some type of animal print!
So pretty much everything about me has changed. My personality is changing. I think what is fun more than what is proper. I think what can I not do today rather than what should I be doing today. I want lots of hugs and I don’t care if I get mussed or if my hat hits the ground. If someone knocks a drink over on my wood table? Who cares? Not me. I have paper towels, furniture oil, carpet cleaner. I’ll point the way and they can clean up the mess. I reckon I am in Sweet Brown mode: Ain’t nobody got time for that!
I choose to focus on making the moments count for something. I want to make my mark. I want to make an impression that will not be forgotten and cannot be erased with my memories. I hate this disease. I hate that I have it in my brain. But unless God see fit to remove it, it ain’t going anywhere. I can accept that. I don’t have to like it, I will never embrace it, but I will learn to live with it and the limitations it brings. Thank God, HE’s with me every day!
I’m fairly certain I have become a rebel. I say what I think. I do what I want when I want. But everything I do now, post E-oA, is all with one goal in mind. To spend every moment on something that matters in the future. If writing my life out helps someone along their journey, I’m writing. I know spending quality time with my family counts, and I am completely greedy about that one. More, more, more time, please. Come here. Let’s do dinner. Let’s have a picnic. Let’s go to the lake. Let’s do something, anything together. Prayer time, Bible time, Family time. I crave it like the oxygen my lungs need. I really don’t care about anything else. I promise you, I do not!! If you are my friend, you are included under family time. So if you want to stop by for a visit, come on! My hubby will let you come in. LOL My house might be dirty, I may be in my jammies or I may be dressed to the nines, but I would love a hug!
That is the answer to the question! That is how I feel about the changes going on in my brain. They suck but my life does not!