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I can't remember it
Horse Lover
Posted: Thursday, September 6, 2018 9:36 PM
Joined: 11/4/2017
Posts: 124


Did/do any of you have a problem with "believing" your diagnosis of EOAD?  Even though the doctor has insisted that I have it, I'm having a really rough time believing it.  My husband has given me examples of things that I do, but I just can't remember having done them.  For example, he says that I repeat myself a lot.  I have no memory of having previously told him whatever it is that I am repeating.  He says that I schedule appointments when I already have other appointments scheduled.  I write them down but somehow can't seem to keep it straight.  These are just a few of the things that he says that I do.  I JUST CAN'T REMEMBER IT!!!  Since I can't remember it, I don't recognize that I'm having that issue.  So, it's hard to believe that I'm doing it.  My husband is a very honest person and I do believe him but down deep, I just can't accept that I have Alzheimer's.  It's very depressing.  I feel that I'm ok but I believe my husband when he says that I'm not ok.  It makes me wonder, what else will I not be able to remember?  What else will I do that I can't see for myself?  Is this why so many Alzheimer's patients don't want to give up their car keys?  Are they not able to recognize or remember that they don't remember how to get around or how to drive properly.  I'm sooooo confused.  It's very frustrating.  I've always had an excellent memory.  I could remember conversations verbatim.  Now, apparently I can't remember what I myself have said.  I'm not sure if I'm depressed or just pissed off about it.  I keep asking myself how I could not remember my conversations with my husband or daughter.  This is so irritating.
llee08032
Posted: Friday, September 7, 2018 10:19 AM
Joined: 5/20/2014
Posts: 4406


HL,

No one wants to believe or accept such a diagnosis. I repeat also and have come up with a few short responses which helps me not to feel self conscious or overly anxious in social situations. In other words it helps to save face.

My being aware that I will no doubt forget what I already told someone is a positive. I know longer disbelieve that I forgot an important conversation with a loved one or anyone else for that matter. Of course I don't remember how this came about (my acceptance of forgetting)  but I remember one day in particular when a co-worker said to me "you already said that." I responded back to her "I have no doubt that I already said that" and somehow in that moment after having said that simple sentence this feeling of empowerment came over me. I did not feel angry at the woman or feel ashamed. 

Sometimes I'll fake like I already know I repeated something and say, "Oh yes. That's important to me." It's not really the words that matter it's the feeling of you knowing that you are never less than someone else.  You are never less than someone else.

Eventually, we must cut ourselves some slack for forgetting because it's not going to stop happening and we can't stop it from happening. The people closest to us need to learn that they don't always have to remind us when we forget something or repeat ourselves know matter how well intended they may feel reminding you may be.

I'm noticing now more than ever how others w/o impairments forget stuff and repeat themselves too. It's frustrating seeing that they are too distracted by their gadgets or their airs of self importance. That only "they" have somewhere important to go or something important to do. There are times when I will remind a distracted person I care about to be safe. I've also asked others to remind me of things that I feared I would forget and got disappointed instead of reminded. 


jfkoc
Posted: Friday, September 7, 2018 12:04 PM
Joined: 12/4/2011
Posts: 17529


I hope those around you are not reminding you that you are "forgetting". If  they are let us know and we can post some info for them.
Mimi S.
Posted: Friday, September 7, 2018 12:36 PM
Joined: 11/29/2011
Posts: 7035


The way I read the post, Horse Lover is questioning her diagnosis and her husband is giving examples of why he believes the diagnosis to be correct. Those with dementia problems keep repeating the questions, because we do not remember that we have just asked and been answered that same question.

Would the neurologist who supervised the neuro-psych and/or the entire process be willing to chat with you and hubby?

Some folks don't want to believe. Others, like me, knew something was wrong and were relived to get an answer.


BadMoonRising
Posted: Friday, September 7, 2018 2:12 PM
Joined: 4/22/2017
Posts: 278


There's repeating...and then there's repeating. I live alone, but talk to several people weekly. I will repeat myself but NOT in the same conversation or within an hour or two of that conversation. Significant difference.

Scheduling errors? No. But I'm not working and I'm not scheduling for others besides myself.

Nevertheless, one year after diagnosis and after a huge amount of research I have accepted that I have AD, but not dementia. Because of the significant amount of amyloid seen on my scan, I am convinced that the deposition of the amyloid plateaued and further accumulation will be at a much slower pace. I am also somewhat heartened that I see no atrophy. MCI? Maybe.

Horse Lover, it takes a while to process the diagnosis. If I recall correctly, you had an Amyloid Pet after a positive CSF-tau test result, yes? If so, you have AD. You may not have dementia at this point but your symptoms combined with your test results pretty much confirm the diagnosis. You're still early in the disease process and probably functioning at a high level. Surely that makes it more difficult to accept that you have this disease.


Iris L.
Posted: Saturday, September 8, 2018 2:20 PM
Joined: 12/15/2011
Posts: 16187


I had the opposite experience.  I KNEW my memory was failing, but I had trouble convincing other people, including professionals, that I was having so much difficulty.  This is another reason why I don't disclose to people now.  I don't need the hassle of trying to convince people that my memory is causing me problems.  At the same time, I am learning accommodations for my poor memory.


Iris L.


Horse Lover
Posted: Sunday, September 9, 2018 3:37 PM
Joined: 11/4/2017
Posts: 124


Thanks to each of you for your responses.  

JFKOC, my husband does remind me that I have already said certain things, but I want him to do that.  I know from when I was a teen, my mother constantly repeating things became very annoying.  However, we didn't know at the time that she had Alzheimers.  I want my husband to point it out to me so that I have some knowledge that I am repeating myself.  Otherwise, I have no clue and it makes it very difficult for me to believe that I have this disease if I am led to believe that all is well.  However, I wish that he could find a more gentle was of saying it that pointing out that he "corrects" me when I repeat myself.  I just don't know how to explain to him that the way he says it is hurtful.  He's just doing what I asked him to do.  

Llee, I appreciate your advice.  I hope that I can reach a point of acceptance the way that you have.  You've obviously had a lot of practice dealing with this issue.  

Mimi.  You are correct.  I am questioning my diagnosis and my husband is trying to be helpful.  My neurologist isn't good at explaining things.  So, someone from the Alzheimer's association in my state has agreed to meet with us to help us figure out the things that we need to know and hopefully she can help me "understand" my diagnosis a little better.  Also, maybe she can make some suggestions for my husband as well.  I am really wishing that I didn't know just yet that I have this disease.  I only went and got tested upon my husband's insistence.  Alzheimer's runs in my family and my husband was concerned with the changes that he had noticed.  Honestly, I thought that the testing would show that I didn't have it and that my husband and I would find some relief with the news.  The last thing that I expected was to receive a diagnosis of EOAD.  Now, I'm signing up for research studies and otherwise, feeling pretty helpless about what I can and can't do.  On my last visit (Aug. 30th), my doctor told me that I could go on disability whenever I choose.  She said that she would help me with it when I decide that I'm ready.  The thing is, I'm not sure I'll ever be ready.  I hate this disease and what it is doing to me and my family.  I hate the changes that are taking place.  I don't want to quit working.  I love what I do.  It's all so frustrating.  

BadMoonRising, you're absolutely right.  I am still functioning at a high level and that IS making it difficult for me to accept the diagnosis.  Yes, I did have a positive CSF tau test.  Also, when my PET scan came back, I had too much amyloid plaque to qualify for the research study that I had volunteered for.  Not only were they surprised that I had so much plaque, but my doctor and I were also surprised.  None of us expected those results.  My doctor confirmed what you said.  I asked her if there was any way that this was NOT Alzheimer's and she said no.  I DO have it.  I'm very disappointed.  I really had hoped that somehow there was a mistake.  Somehow, I must have misunderstood.  I've spent a year trying to convince myself that I have this disease.  The harder I try and the more I research the subject, the more I don't want to believe it.  I hate this )*(*&^* disease!!!


Despera-termined
Posted: Monday, September 10, 2018 7:31 AM
Joined: 4/2/2015
Posts: 45


Iris L. wrote:

I had the opposite experience.  I KNEW my memory was failing, but I had trouble convincing other people, including professionals, that I was having so much difficulty.  This is another reason why I don't disclose to people now.  I don't need the hassle of trying to convince people that my memory is causing me problems.  At the same time, I am learning accommodations for my poor memory.


I had this same experience Iris.  Now I struggle with some resentment because I feel like I should have been listened to before.  Arrrgh.  I'm like well duh don't be so freaking surprised now, if you had listened to me before I wouldn't have felt so isolated.  


Mimi S.
Posted: Monday, September 10, 2018 12:34 PM
Joined: 11/29/2011
Posts: 7035


In my opinion, it is still difficult to get diagnosed in Early Xtager. We know we are having memory problems, but even professionals think we should be ating like we are well into middle stage.  

Going to a GP is often useless.  We need to push others to get to a large medical Center or University with a dementia department.

Our on-site resources here are wonderful, but we also need to meet others like ourselves.

If you can, get to the annual Spring Forum in DC.  To me, the best part is meeting others so diagnosed.  I haven't been in years, but then there was a little circle on our name tag that ID us as Early Stagers.  It was the only way to tell. Some folks didn't want to be IDd, so you could remove the circle.  To me it was a wonderful conversation starter.

There is usually a meeting at the beginning of the conference just for those of us PWDs.  

Do ask your local chapter to connect you with others in your area.  Perhaps there is a support group or Memory Cafe.


Horse Lover
Posted: Monday, September 10, 2018 5:22 PM
Joined: 11/4/2017
Posts: 124


Mimi, Thanks for your advice.  Can you tell me when the spring forum is being held or where I can find more info on the subject?
Mimi S.
Posted: Monday, September 10, 2018 8:21 PM
Joined: 11/29/2011
Posts: 7035


The help line: 1-800-272-3900 should have the date.

If the date fits, contact your local Alz. Chapter, ask the help line and call during normal business hours. If you don't need a caregiver, they may able to set you up with a room mate to save costs.  All we PWD is is our room. If you get there before the official opening, you pay dinner. A goup of us PWD used to go out to eat the evening before the official opening.

 

Do try to go!!!!
Iris L.
Posted: Tuesday, September 11, 2018 3:43 PM
Joined: 12/15/2011
Posts: 16187


Despera, I struggled with a lot of resentment, and still do at times. But I have discovered that resentment is a distraction that hinders my focus.  My focus is on maintaining my independence and functioning better.  Living with dementia is so unlike living with other diseases that everything involves a new learning curve.  I have to take special steps to fight against isolation.


Iris L.