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What do you wish your family and friends understood about you?
Iris L.
Posted: Monday, March 5, 2012 10:28 AM
Joined: 12/15/2011
Posts: 16240


I wish my long-time friends, who are like family to me, understood that if I don't speak with them in a while on the telephone it is not because I am angry with them.   

 

It is because communication is harder for me.  I have to organize and plan my thoughts and spontaneous off-the-top-of-my-head speech is not that easy for me now.   

 

I wish they would not take my hesitations personally and take offense so readily.  I wish they could be more patient. 

 

Iris L. 


Lisa428
Posted: Monday, March 5, 2012 11:49 PM
Joined: 12/5/2011
Posts: 795


Iris,

 

Like you, I wish my family would understand that I am slower that I used to be.  It takes more time to accomplish things.  It's very frustrating!

 

Believe me, I have a wonderful family but they are still in denial of my illness.

 

I am declining.  My family that sees me every day doesn't see the decline.  But when I visit my daughter, she sees the decline.  She said it scares her.  I tell her not to worry but it scares me to death.

 

It takes me twice as long to do a post.  I've lost much of my spelling abilities and tense changes.  My posts often make me feel foolish.  I used to be so good at all that writing stuff. 

 

I wish people could understand that I'm fighting each and every day to stay where I am and continue to be me (Lisa).  It's very hard work which makes me very tired.  Often, I feel exhausted and need to sleep.

 

I keep telling myself to stop fighting and just let things happen.  But, I just can't!

 

My therapist said That I am no longer able to fight everything daily.  I must choose my battles and let the others go!  I am trying to take her advice but it is very difficult!

 

Does anyone know what I am talking about?

 

Peace and hope,

 

Lisa

 

 


Iris L.
Posted: Tuesday, March 6, 2012 12:50 AM
Joined: 12/15/2011
Posts: 16240


I hear you, Lisa.  I feel myself slipping away bit by bit.  It is not fast, but it is faster than before.  I want to go ALL OUT and enjoy myself but I can't function that well away from home.  I'm still trying to figure out what is wrong with me. 

 

I don't think my family ever thinks that there might be something wrong with me.  My friends think I'm a hypochondriac. 

 

Iris L. 


Mimi S.
Posted: Tuesday, March 6, 2012 8:29 AM
Joined: 11/29/2011
Posts: 7035


I think the fact is that we know our bodies better than anyone. We know when we're worse than we were last week.


Lisa, you're lucky that you and our daughter can talk the reality, even though it scares you.


Lots of people, as much as we try to educate them about Early Stage, still believe or think they are doing us a favor by denying there is anything wrong with us.


For a long time I shrugged it off, thinking I still need to educate them further.


Lately, I am feeling anger and frustrtaion towards them.


frustrated047
Posted: Tuesday, March 6, 2012 12:11 PM
Joined: 12/18/2011
Posts: 36


Boy Iris L., Lisa428 & Mimi S. - I have similar thoughts and feelings!  I don't post too much here, but here goes...Iris L., when you wrote:  

   

It is because communication is harder for me. I have to organize and plan my thoughts and spontaneous off-the-top-of-my-head speech is not that easy for me now."  

 

Today I have to try to explain to my 24 yr.old son that I don't mind things he reads to me that he finds interesting.  Last night after he read something to me and I told him I thought it was interesting and said a few words, but I obviously let him down in my response.  He told me later that he felt I did not like him to read to me things he finds interesting.  I have to explain to him  pretty much what you wrote.  I just can't talk and debate about things like I used to.

 

Others have obviously noticed that I don't seem to have too much to say, like I used to.  My younger son has noticed that "I'm not the same mother I used to be."  These things truly break my heart. 

 

 

 

 

 


Lisa428
Posted: Tuesday, March 6, 2012 10:37 PM
Joined: 12/5/2011
Posts: 795


Hi to All,

 

I sometimes feel like shouting "No, you don't know what I am talking about!"

 

I have Alzheimer's Disease and I am slowly loosing my mind!!!

 

Sorry, I'm a bit  angery and sad right


Lisa428
Posted: Tuesday, March 6, 2012 10:38 PM
Joined: 12/5/2011
Posts: 795


Hi to All,

 

I sometimes feel like shouting "No, you don't know what I am talking about!"

 

I have Alzheimer's Disease and I am slowly loosing my mind!!!

 

Sorry, I'm a bit  angery and sad right now.

 

Good night.

 

 


Iris L.
Posted: Tuesday, March 6, 2012 10:46 PM
Joined: 12/15/2011
Posts: 16240


{{{{{{{{Lisa}}}}}}}} 

 

Iris L. 


frustrated047
Posted: Tuesday, March 6, 2012 10:50 PM
Joined: 12/18/2011
Posts: 36


Lisa428 wrote:

Hi to All,

 

I sometimes feel like shouting "No, you don't know what I am talking about!"

 

I have Alzheimer's Disease and I am slowly loosing my mind!!!

 

Sorry, I'm a bit  angery and sad right now.

 

Good night.

 

 


My Goodness Lisa428, I feel like that quite a bit!! 

Hope you, Iris L. & Mimi S. have a better day tomorrow


Lisa428
Posted: Wednesday, March 7, 2012 11:20 AM
Joined: 12/5/2011
Posts: 795


Hi,

 

I must apologize for my behavior.  I'm sorry.  I am going through a difficult time now.

 

Please, forgive me.

 

Lisa


Myriam
Posted: Wednesday, March 7, 2012 4:15 PM
Joined: 12/6/2011
Posts: 3326


Big hug to you, Lisa &gt;:D< big hug

:x lovestruck


Mimi S.
Posted: Wednesday, March 7, 2012 4:24 PM
Joined: 11/29/2011
Posts: 7035


Hi Frustrated.

And I do understand what you are saying. 

 

What have your sons done to educate themselves about AD since your diagnosis?

 

And one book or pamphlet won't do it.

They have to read and read.

 

Are they connected with their local AD Assoc.?

Tell them you need love and support now and in the future. Tell them your cognition is declining. You will continue fighting and doing the Best Practices, but they have to help. Tell them you need information in small bits. Your mind can only attempt to remember so much at a time. And if you forget it tomorrow, so what? That's the nature of the disease and get used to it.


Mimi S.
Posted: Wednesday, March 7, 2012 4:26 PM
Joined: 11/29/2011
Posts: 7035


Lisa,

You have nothing to be sorry about. You are scared and shared that. Good for you!


These boards are for just that!


frustrated047
Posted: Wednesday, March 7, 2012 5:55 PM
Joined: 12/18/2011
Posts: 36


Thank-you Mimi S..  After I did explain it to my older son, he told me he appreciated that I explained it to him.  This is all still in the beginning learning stages for most loved ones around me.   

 

I want to thank-you and the other "regular" posters on here that post often and with helpful and encouraging thoughts and words.  As I have mentioned, I'm kind of new here and have had kind of a hard time "fitting" in.  I am learning a lot as I go along.   

 

Your right, Lisa428 does not need to apologize...I feel exactly like that a lot of the time as I said  

 

 


Iris L.
Posted: Wednesday, March 7, 2012 11:42 PM
Joined: 12/15/2011
Posts: 16240


No need to apologize, Lisa. 

 

This is our place to share our feelings.   

 

Iris L. 


Lisa428
Posted: Saturday, March 10, 2012 11:47 AM
Joined: 12/5/2011
Posts: 795


Hi to All,

 

I'm feeling a little better today.  It's been a hard couple of weeks.

 

Thank you all for listening and not judging.

 

Isn't it great to have this place to come to?

 

We complain a lot about it but it is wonderful in many ways.

 

Thanks for listening.

 

Peace and Hope,

Lisa


SteveSanJose
Posted: Saturday, March 10, 2012 1:10 PM
Joined: 1/3/2012
Posts: 189


I have found with communication that I also have trouble organize my thoughts, and slower with my EOAD. I now see life, which to me is communication, socialization, staying active, and eating right; as part of my new job. It is like I am working again. I have found that most people are understand and compassionate when it comes to a obvious disability like memory impaired speech.

School Uniform

 


hopeful30
Posted: Tuesday, March 13, 2012 1:47 PM
Joined: 12/31/2011
Posts: 64


hi lisa,havent been on in awhile. i fell a little over a week ago and got quite banged up, ribs legs and my good shoulder is now also "bad". i am getting better slowly and am glad i saw this topic. in the other forum i posted almosr the same thing and was glad to see its not just my problem!! i even said the same thing about "knowing" what i said! my family and most of my friends say i "look good" therefore i am OK!!! meanwhile, i am slowly losing my mind every day, i completely get where you are coming from. i had to let go of alot of that stuff though because it was making me crazy (LOL) i took advice from the wise ones on this site and am slowly coming to a sense of peace. do i wish they understood?? of course, but that wont make it so, so just remember they just cant know and maybe dont want to! we are here for you ok?