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What it's like
llee08032
Posted: Wednesday, August 9, 2017 7:42 AM
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.

 


llee08032
Posted: Wednesday, August 9, 2017 7:46 AM
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"


llee08032
Posted: Wednesday, August 9, 2017 7:51 AM
Joined: 5/20/2014
Posts: 4408


Title

What Does it Feel Like to Develop AD


Andrew60
Posted: Wednesday, August 9, 2017 9:27 AM
Joined: 7/17/2017
Posts: 342


That was an excellent read. Im so very thankful that at this time, I can only identify with some of what you wrote. Im going to keep your posts for future references to give to my friends when they ask too many questions.

Thanks for posting that.


Mimi S.
Posted: Wednesday, August 9, 2017 9:41 AM
Joined: 11/29/2011
Posts: 7027


Was this already published?

It needs a wider circulation in a national press. 


lisabramey
Posted: Wednesday, August 9, 2017 10:54 AM
Joined: 3/20/2015
Posts: 96


Dear llee,

Very well expressed. I agree with Mimi this needs national publication. Thanks for giving words and order of thought to how I feel at least.

Lisa


EmancipatedToes
Posted: Wednesday, August 9, 2017 11:12 AM
Joined: 4/25/2017
Posts: 104


Well, I was not expecting to cry at my desk today! Thank you so much for sharing this. It is very well written, I am going to share this high and low. Much love and respect, always.
Sayra
Posted: Wednesday, August 9, 2017 12:20 PM
Joined: 8/10/2016
Posts: 4049


Thanks for sharing

Sara


Iris L.
Posted: Wednesday, August 9, 2017 2:35 PM
Joined: 12/15/2011
Posts: 18509


I was like this in the early years.  Fortunately, I found this board, and Mimi and the other members educated me about Best Practices, to improve my functioning and to prolong the early stages.  After eight years of Best Practices, I believe I am essentially plateaued.  All of the dementias are hard to live with but it is good for us to know that there is something that can be done about it.  I am so appreciative of this board and all the members!


Iris L.


BlueSkies
Posted: Wednesday, August 9, 2017 7:06 PM
Joined: 2/24/2016
Posts: 1096


Thanks llee for posting this so others know what this is like.  I can relate to most of the descriptions.  I have been told by my neurologist and my neuropsychologist that I have moderate to severe dementia.  I eat well and follow best practices.  I am sure it helps, but I have not "plateaued".  Everyone is not as lucky as Iris.  I am still progressing and fairly quickly from the looks of it.  I think this EO board is more for people with early stages of dementia.  Or at least it seems that way.  I am continually getting my feelings hurt because I am progressing and feel others here on EO, either don't believe me, think I am exaggerating or they think it's my own fault for not following best practices (which I am).  In any case, I don't feel very liked or welcomed here by many anymore.  I don't feel comfortable posting on EO because of this.  So I am not going to post here any longer.  I will however post in musings once in awhile where members seem to understand me and anyone who would like to stay in touch with me, can find me there.  Wishing all of you the best and hoping you all are able to "plateau" and not progress.  I guess I am just not very lucky with best practices.

Love to all, BlueSkies


Iris L.
Posted: Wednesday, August 9, 2017 9:51 PM
Joined: 12/15/2011
Posts: 18509


The AA has a saying, "If you've seen one person with dementia, you've seen one person with dementia."  Everyone is different and responds or progresses his or her own way.  None of us is in total control of ourselves.  We do the best we can with Best Practices or whatever other modalities we try.  I truly believe that everyone must develop a philosophy of having dementia.  At one time, I fell into a deep depression.  I said to myself, if I have a terminal illness, how do I want to go out?  I decided, after much soul-searching, that I was not going out like a victim.  I decided I would do whatever it took for me to go out with my head held high, with my dignity intact.  This is what I am doing for myself.  I am making these years meaningful and fulfilling for ME.  What I want for myself is not what the next PWD wants for herself.  We all have to decide where our meaning is.


Iris L.



Iris L.
Posted: Wednesday, August 9, 2017 10:42 PM
Joined: 12/15/2011
Posts: 18509


Blue Skies, you obviously don't feel supported.  I feel that I am missing something.  What do you need from me to feel supported?  I don't believe you should leave this board. This is the only place to find support.  If you're having a hard time, please say so!  Despite what you may think, my life isn't perfect.  I am in a crisis right now.  I just haven't posted about it.


Iris L.  

 


Eileen72
Posted: Thursday, August 10, 2017 6:33 AM
Joined: 6/10/2017
Posts: 312


Dear Blue Skies......Please don't leave.  I do not have dementia but I deeply love a victim of this dreaded disease.  I have read many of your posts and they have helped me see his life through your posts and have given me the tools to help him and to love him even more.  

How can I help you?  You are a valued member of these boards.  Tell us how we can help you!

I care about you...please stay.

Eileen


BillBRNC
Posted: Thursday, August 10, 2017 8:25 AM
Joined: 12/2/2015
Posts: 1018


BlueSkies has a point, which is hard to truly understand if you aren't experiencing what she is describing. Many good folks here are very early in the journey and don't really grasp what she is describing. Others have somewhat stable cognitive impairment, or at least progressing at a glacial pace, and thus don't really understand what she is describing. This must be hard for BlueSkies, as it is also hard for me. Over the past year or two, I've been moving downhill or around the bend at a fair pace. I can feel my life force just melting away, so much so that I now am getting ready to move to a place that can take care of me through to the end. I'm not comfortable any more in the real world, because the real world to most people is not the real world that I live in anymore. It is scary as hell to feel your life slowing draining out of your brain and body. I have significant hip and shoulder pain almost all the time due to the Parkinson side of my Dementia with Lewy Bodies. The medication to help that also tends to make my cognitive state worse and my anxiety/anger state worse, so I take a reduced dose. I would rather have the pain than have the other, so I adjust to find the best spot. But the cognitive and behavioral keep getting worse with passing of days. If a person not going though this, then it is hard to fully grasp. I don't hold against folks who don't understand, as I glad they don't because that means they are in a better place. I know their better place isn't a good place for them, as it is still dementia they have and it isn't going to get better. I don't know what I'm trying to say, other than I understand what BlueSkies is saying, and it makes sense to me, because I feel a lot the same way. Life goes on, but for some it doesn't go on very well. Bill.
Iris L.
Posted: Thursday, August 10, 2017 11:39 AM
Joined: 12/15/2011
Posts: 18509


Thank you for sharing, Bill.  I understand what you are saying.  You are posting for many like you.  These boards are for PWDs in different stages, not just early stage.  All of us should feel supported and loved.


Iris L.


alz+
Posted: Thursday, August 10, 2017 4:22 PM
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.


llee08032
Posted: Friday, August 11, 2017 7:20 AM
Joined: 5/20/2014
Posts: 4408


I did not write this....found this piece on FB. It is an in depth depiction touching on many areas. I agree it should be published on a much wider scale. I'll see if I can get some info on the author. Love you all no matter where you are.
julielarson
Posted: Friday, August 11, 2017 8:16 AM
Joined: 9/30/2015
Posts: 1155


What a read, I could see myself in some of the descriptions to a small degree.. It made me very uncomfortable to do what I consider to be the declines in abilities.. I saw the humanity in the writing and I was grateful that he could give us a look into something that is so hard for most of us to understand.. Thanks llee for sharing this.
feudman
Posted: Saturday, August 12, 2017 8:31 AM
Joined: 6/5/2014
Posts: 1591


Ive not been tested, but I can very much relate to some of the descriptions. Most of my friends think I quit working to be a full-time care partner, but actually, it was because I was no longer able to perform my job efficiently, due to memory and disorganizational issues. I have seen no improvement since retiring from primary caregiving over a month ago, so I think it is time to be tested.
Eileen72
Posted: Saturday, August 12, 2017 8:55 AM
Joined: 6/10/2017
Posts: 312


My dear Feudman,

Just saw you post and I gasped!  You have helped so many here. I will add you to my prayers.  Know that we have your back and if I can help in ANY way I will.  As a cypher friend I feel that other than in posts there isn't much I can do. Please keep us updated and a big hug to you.

Prayers to and for you,

Eileen


llee08032
Posted: Saturday, August 12, 2017 9:06 AM
Joined: 5/20/2014
Posts: 4408


I emailed the author and invited him to the board to see your comments on his great article. He did get back to me and was appreciative. 
mcarley
Posted: Saturday, August 12, 2017 12:17 PM
Joined: 5/16/2016
Posts: 95


Hello all,

Thanks for all the nice comments.   I wrote this piece recently based on my wife's experience.   She was diagnosed with early-onset Alzheimer's about three years ago.  Not every detail in what I wrote is true to her experience  (yet) but most are.

Here's a like to the original posting if you'd like to share.  

https://goodmenproject.com/guy-talk/feel-like-develop-alzheimers-disease-bbab/

 

 


llee08032
Posted: Monday, August 14, 2017 8:45 AM
Joined: 5/20/2014
Posts: 4408


Thank you for stopping by Michael and sharing your exp with your wife. You and she have really nailed it with What it's Like to Develop Alzheimer's and your putting words and a voice to the exp is greatly appreciated.
Mimi S.
Posted: Monday, August 14, 2017 10:19 AM
Joined: 11/29/2011
Posts: 7027


Thanks also, McCarley.

I do hope you try to get it published in a magazine with national circulation.


Mimi S.
Posted: Monday, August 14, 2017 10:21 AM
Joined: 11/29/2011
Posts: 7027


Feudman,

Please do get tested.  Go to the best place you can find, usually a large Medical Center or University with a dementia department.


Mimi S.
Posted: Monday, August 14, 2017 10:27 AM
Joined: 11/29/2011
Posts: 7027


Feudman,

Please do get tested.  Go to the best place you can find, usually a large Medical Center or University with a dementia department.