Joined: 5/20/2014
Posts: 4408
|
Have you ever walked into a room and forgotten why you’re there? You probably have. Most of us have at one time or another.
But what if, instead of this happening every once in a while, it a couple of times a day? Then, several times a day.
Maybe it starts with a missed appointment, or a few of them. You can never seem to keep your schedule straight. The things that you do every day at the same time pose no problem, but the haircut, the doctor, the dentist, the therapist, these are all irregular and somehow, you seem to be showing up at the wrong time or on the wrong day.
You find yourself losing things, your keys, phone, wallet, nothing seems to be where you put it. You try keeping things in the same place each time, but it never seems to work. Someone must be moving them.
People are starting to think you are a flake, unreliable. They get frustrated with you and you don’t understand why. You get defensive and angry. You feel a lack of control of the ability to manage your own affairs.
So, you try to grasp for control. You come up with techniques to manage your diminishing skills. They take time and attention away from other things, but they give you a sense of purpose. You make lists, you lay out your clothes for the day ahead of time, you plan more than you ever had in your life.
You might use technology to help, putting things on the calendar, in your phone or computer. But somehow, that backfires. The calendar in your phone never seems to match the one on the wall. Appointments change and you can never remember why.
People are looking at you funny for other reasons. “You just said that,” they keep telling you. Somehow, you seem to have repeated the same thing twice within five minutes, though you have no memory of doing so.
On the other hand, you ask other people questions they claim to have already answered. Arguments ensue, putting a strain on your relationships. Increasingly, people are getting frustrated with you, yet you have no control of, memory of, or, in some cases, understanding of, the things they say you are doing wrong. If you could fix it, you would, but as often as not, you don’t even remember it happening.
This is making you second-guess yourself and undermining your confidence. You feel guilt, perhaps withdraw into yourself, start apologizing, even when you haven’t done anything wrong. Or, when what you’ve done isn’t something you can do anything about.
Someone is giving you driving directions, but there are too many steps. You can’t possibly remember them. You adjust by writing more things down.
At work, people around you are getting annoyed. How can you get things done when you can’t remember what has been requested of you? You can’t keep asking others over and over. So, you guess, but sometimes, you guess wrong. Your bosses and coworkers are starting to think you can’t be trusted with basic tasks.
You no longer keep track of the days of the week. You know that certain appointments occur on certain days, but when you wake up in the morning, which day it is is a complete mystery.
Tasks are becoming more difficult. You have to ask how to spell simple words. Balancing your accounts and paying your bills is strenuous. The bills get lost and you get confused in math steps that once came easily.
Technology is starting to baffle you. Computers seem to be using a foreign language. The television remote has too many buttons. The functions on your cell phone have become confusing and they seem to be moving around. Manuals may as well be written in a foreign language. Lately, even light switches are causing you difficulty.
Going out to eat has become difficult. The menu is confusing and there’s too much noise, which you can’t filter out. People try to help you by asking, do you want A, or B, or C? But by the time they get to C, you’ve forgotten what A was, and if anyone says a word, B is gone too. You end up getting C, even if reluctantly. When it arrives, you don’t remember ordering it.
Conversations, especially in large groups, become difficult to follow. People are speaking too fast and you cannot keep up. You try to contribute to the discussion, but when you make a comment, people stare in awkward silence. You must have said something wrong, but you cannot figure out what it is. Somehow, you seem to have derailed the conversation. It is making you nervous and reluctant to participate.
Nothing in your house is where it is supposed to be. The dishes are in different cabinets each time you go to find them. Now, you’re guessing where to put things. You try to put laundry away, but you cannot remember which is your underwear drawer and which one is your sock drawer. You start putting things away randomly because that seems to be the easiest way to find them the next time.
You are running out of things at home all the time, coffee, salt, toiletries. Making lists doesn’t work anymore, so there are nearly daily trips to the store.
The doctor wants you to take a driving test and reluctantly, you comply. You are tentative, but sure you have passed, yet the DMV instructor says otherwise. You wonder what he has against you. Of course, you’d never want to hurt anyone.
But now, you have lost your license, your independence. You must rely on others for the simplest of things. You feel trapped, isolated. You can no longer work and now, you cannot run an errand by yourself.
Others though, are helpful. You find you have more friends, and more loyal ones, than you ever thought. Some people drop away, too busy with their own lives, but others step up in ways you could never have imagined. They take you places, listen, and do not judge. You feel incredible gratitude, but also responsibility and guilt.
You miss important events. Birthdays, anniversaries. Your spouse gets you a present, but you forgot to get one, though it crossed your mind several times. You feel guilty, so you buy one for the next event, but you misplace it. It must be somewhere. You try to explain what it is and where it might be, but cannot seem to get the words right. Your spouse says it’s OK; a present isn’t necessary, but it’s another loss. Your relationship has become one-sided in too many ways.
Those around you seem to keep things from you. You never know from one moment to another what you are supposed to be doing. You get in the car and eventually, you are at a location you hadn’t realized you were going to. No one seems to include you in the planning or decision-making, or if they did, you don’t remember. You try to let things go and just show up where you are supposed to. Do what you are supposed to.
Relaxing and just going with the flow makes things easier, but it’s harder than you’d think. Hovering over you is this pervasive sense that you are supposed to be somewhere, doing something, that you are missing some important task or appointment and letting someone down. When others try to reassure you, you calm for a moment, but the feeling never completely goes away.
This anxiety becomes a part of your everyday life. As your short-term memory has become less reliable, there are more instances when you don’t know what you’re supposed to be doing. You are in a store, looking for something, but you’re not sure what. You pick something up off the shelf and put it into your cart, hoping it is the right thing.
Reading was a passion, but books no longer provide the joy they once did. You cannot seem to keep up with the story and find yourself reading the same paragraph over and over and not retaining it.
Television has the same problem. You watch a show, but the story seems incoherent, filled with disconnected scenes and characters. You see someone you think must be important, but cannot place them. You start watching the same shows over and over as they provide a comfort.
|
Joined: 5/20/2014
Posts: 4408
|
continued....
Someone takes you to the movies, but you cannot remember which film you are there to see, though you had been excited about it. You step out for the restroom and enter the one for the wrong gender, find yourself apologizing. Or, you return to the wrong theatre; the people you came with are not there.
It’s getting harder to make yourself understood. You have something important to say, but the words won’t come to you. Sometimes, just one word, usually the noun, is missing. Sometimes, you get the sentence out, but see a blank look from whomever you are speaking to, as though you were speaking gibberish, or another language altogether.
Your nutrition is suffering. You are hungry, but you aren’t sure if you ate breakfast. So, you get a snack. Sometimes, you’re forgetting to get enough of the right foods or drink enough water and it affects your physical health and contributes to your mental fuzziness.
Fuzzy is what you feel; it’s like there’s a constant fog in your brain, like you are drunk or under the influence of some substance. It takes you longer to do anything and you start several things without being able to finish them.
You find half-eaten sandwiches on the counter, but don’t remember making them. Maybe someone else did. You pull out clothes to get dressed, but don’t remember doing so. You pull out some more and they are piling up in your room. You don’t remember which ones are clean, so you wash them all. Your spouse says you washed them the wrong way, but you don’t understand why.
Things take longer. That sandwich took you fifteen minutes to make and it doesn’t taste right. A cup of coffee takes twenty minutes, sometimes thirty. But it doesn’t matter. Time is all you have.
It feels like people are talking behind your back. Conversations are disconnected and others often forget to include you. When they do speak to you, they are often condescending. Sometimes, they speak about you in the third person, even when you are right there in the room. Increasingly, they are making decisions for you. It has become infantilizing.
Not everything is bad. You find new outlets. Long dormant hobbies come to the fore, the changes to your brain seem to have reduced mental blocks and barriers. You find talents you never knew you had. Artistic, creative. And as a consolation for your isolation, you now have the time to pursue them.
There may be children in your life, whom you love dearly. But, it’s getting difficult to be around them. They speak too fast; they are unpredictable, and they seem to interrupt all the time. You find yourself getting impatient and abrupt with them and they don’t understand why. They’re getting reluctant to be around you and this is a painful loss.
Your temper is short with others as well. You are confused and people seem to be tricking you, moving things around, stealing from you, or lying about you. They are correcting you when you are sure you are right. You find yourself snapping at them and saying things you never would have said before.
Now, your longer-term memory is starting to be affected. You run into someone in the store and you only vaguely remember them and have no idea where you met. People around you talk about events you don’t remember. You find yourself filling in the blanks of the parts you aren’t sure about . Only now, they don’t correct you anymore, but just stare quietly or change the subject.
People are visiting less often and they’re quiet when they do come. It seems they have little to say after a few minutes.
Worry increases. You should be doing something; you should be somewhere, but you’re not sure what or where. You pace around the house, agitated. You wring your hands and develop other ticks and habits. Your brain is a fog, as though filled with cotton candy and stray, disconnected thoughts. You need to move, go somewhere, do … something.
So, you leave. You wander. Whatever it is, wherever you should be, maybe you’ll find it … out there …
—
About Michael Carley
Michael Carley is a writer (among other things) living in central California with his wife and son. His first novel, Know My Name, was published in July 2016. He currently writes a weekly column for the Porterville Recorder, a small local newspaper. He can be contacted at mcarley@gmail.com"
|
Joined: 9/12/2013
Posts: 3608
|
L lee. that is by far best description of life with ALZ I ever read anywhere. Almost everything you wrote (and you covered a huge spectrum of all the little ways our condition dogs us) was crushing me 3 years ago.
I ditto everyone who thinks this should be permanent and shared.
Blue Skies - some of us become very sensitive to what others say and it is so easy to take offense, misunderstand and be misunderstood. I hope you stay as long as you can and want. Your words have helped me. What you wrote in another post I just read about a dream in an elevator was wonderful! You don't seem to take in how your words help others, maybe you underestimate your place here.
I think my stabilization and improvements irritate people here and in other places especially because I use cannabis and cbd oil, and I am trying to not mention the difference it has made in my life while wanting to deliver CBD oil to each and every person in the world so they could function better too. It seems it is unbelievable to other people. I was not well enough to follow best practices enough to make a difference. It is hard on every one of us, I know that much.
Breaks my heart to think of L lee going through what she has described, other than the boards no one in my real life has offered me any comfort or support other than Keeper and my daughter now and then. The illness is incredibly hard, so easy to become depressed.
Everything is just too hard, and when living alone ... where is your day off? even an hour off?
I am also aware I may be having an easier time now because I inherited this and my Dad was a gentle soul through his illness, so maybe it is what parts of my brain have closed up shop. Also I am not working, my husband is still alive and functional and willing to provide food and drive us around as needed. I made my life VERY small and that is my best practice.
This piece by L Lee is EPIC. Better than any account by any other writer. If someone who did not have ALZ read this how could they not respond in kindness and patience? I suppose many people still would act like we are just creepy lazy jerks but this is just brilliant.
|