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Comments that irritate me.
Mimi S.
Posted: Wednesday, August 7, 2013 7:44 PM
Joined: 11/29/2011
Posts: 7027



  • I have been diagnosed over six years and am still in Early Stage.  Increasingly I get comments that indicate the speaker believes I have been misdiagnosed.
"We all forget things as we age." 
I looked one in the eye and asked: Do you forget your grandchildren's names? 
I feel so belittled, as if I'm intending to commit fraud.
Does this happen to you? What questions irritate you the most? Have you been able to come up with a comeback?
Do Caregivers have a question or comment that does the same to them?

Be Strong 2
Posted: Wednesday, August 7, 2013 8:04 PM
Joined: 12/14/2011
Posts: 1751


On the one hand I would love for someone to ask me, "How are you doing?" and really mean it.  Problem is, they really don't want to know.  I've had people turn from me and start talking to someone else when I started to answer the question.  So, my answers consist of, "fine" or "OK".


I'm not sure I will ever be able to completely re-enter the human race.



Remember, we're all in the same boat; and the darn thing leaks!


Bob  


quits
Posted: Thursday, August 8, 2013 9:02 AM
Joined: 12/30/2012
Posts: 3520


I was asked more than once by my husband's only brother didn't I think my husband was faking his memory problem because of the good days and bad days.  I think he is also scared he will get it.  He suggested "Dr Oz said to stop eating "I can't believe it's not butter" and now my memory is better."


Great for him but I have seen the MRI showing FTD thanks. I have seen the answers on the tests for FTD/ALZ and I am here everyday 24/7 for him.  



Lisa428
Posted: Thursday, August 8, 2013 11:43 AM
Joined: 12/5/2011
Posts: 795


Hi,

 

I agree with all of you.  One of my biggest pet peeves is "but you LOOK so good and you're SO Young, you can't have Alzheimers!"  Guess what?  I DO!

 

Or, "You still speak well."  Or the infamous "We all forget things!"

 

These comments do NOT make me feel better!!  They degrade me.

 

Please, acknowledge me as having a problem.  But, I still like to look good.  I work

 

hard at looking good.  Exercising, eating right!

 

Peace and hope,

Lisa


Geegee
Posted: Saturday, August 10, 2013 9:01 AM
Joined: 11/29/2011
Posts: 514


I have all of those same replies.  Yes, I may look good, look healthy and happy, speak with only occasional stuttering now, but that doesn't change the atrophy in three significant areas of my dear brain!  The comparison of images over the years does NOT lie.


Maybe we should carry a wallet sized copy of our films and reports!  Hehe, now that's an idea!  


My favorite remark, after I explained my diagnosis, was from a physician.  He stated that I needed to get another opinion.   Really? Like I was totally stupid and never thought of that?!  Duh!


Needless to say, he is no longer my rheumatologist.  


Then I started weeding out doctors that weren't on board with my reality.




eaglemom
Posted: Saturday, August 10, 2013 10:04 AM
Joined: 3/7/2012
Posts: 2762


I am constantly amazed at how thoughtless people can be.  All of the comments are degrading, period.  No one wants to hear "but he looks good," etc.  I think people say that because they don't know what to say.  My thought is if you don't know what to say, say nothing.  Or better yet just say "glad to see you."

 

Almost all of our friends have stopped asking that question.  They treat DH just like before the diagnosis.  Matter-of-fact they go out of their way to include DH and make everything easy for him.  If we're at a restaurant & DH is sitting with the men folk while I'm with the women folk the guys will say something like "what sounds good? I think you liked the veal last time."  They "handle" the situation, giving me a break.  I find it very tender of them, and very appreciated. 

 

What I struggle with is DH's parents - she has to be the most insensitive person around.  We don't have a good relationship (she thinks we do) but I'd really had to remove her from DH because she says stupid things.  And she admittedly pokes at him to get him upset.  Its a very unreal situation.  My point being those that those whom we think should understand are usually the ones that say the insensitive things. 

 

I would assume everyone has someone whom understands.  I do not know how it feels to DH because I'm not him.  When I've ask he simply says "they don't know what to say."  I have hear him say "I know I look good, but you should spend a day inside my head, then you'd know what its like."  I think he nailed it well.


Iris L.
Posted: Saturday, August 10, 2013 3:37 PM
Joined: 12/15/2011
Posts: 18362


I have a friend who tells convoluted stories about her grown children and grandchildren.  She never says their names but always "he" or "she".  I've told her many times I can't follow her stories and I don't know who she is talking about by he/she or him/her.  She said, "If you were really interested you'd remember".

Another "friend" told me she was giving me "tough love" by not speaking to me because I couldn't remember much of what she told me.

With friends like these who needs enemies?

Iris L.

Iris L.
Posted: Saturday, August 10, 2013 3:42 PM
Joined: 12/15/2011
Posts: 18362


After I had been on Exelon patch and Namenda for two years with good results, my personal psychologist performed a MMSE which I passed, missing only one test.  She denied that I have memory loss, declaring, "I see no memory loss here!"

She also said I couldn't have memory loss because people who have memory loss don't know they have memory loss.  She was speaking of anosognosia, but not everyone has anosognosia.  She refused to believe my protests to the contrary.  So I gave up.

You're right, Mimi, it does make you feel demoralized and degraded to be told you don't know what's in your own mind.

Iris L.

NoWay
Posted: Wednesday, August 21, 2013 6:46 PM
Joined: 8/21/2013
Posts: 4


I just want to SCREAM!!!  and I wish I could CRY!! but I have to go on, because no one close to me or works with me thinks there's anything wrong with me. I was accepted into the respiratory program at school and had to quit because of my inability to remember, or maintain the information being taught. I had my future planned, and really thought I was headed in the right direction, It's so depressing how does everyone handle this?
NoWay
Posted: Wednesday, August 21, 2013 6:50 PM
Joined: 8/21/2013
Posts: 4


Sometimes you just can't fix stupid. I know what your going through I hear it all the time and have no one to talk to about this because they just don't understand. So I just keep it to myself, which is really hard to do.

 


Mimi S.
Posted: Wednesday, August 21, 2013 7:30 PM
Joined: 11/29/2011
Posts: 7027


Hi Noway,

Welcome to our World. I'm so glad you found us.

 

Take a deep breath.  Relax.  Then set about learning as much as you can about MCI.

 

I assume the multiple domains means that you have several areas where you have problems.

 

I  do hope that the person who gave you the diagnosis took time to explain it to you.  You may or may not develop into a full blown dementia. So hope for the best and work hard to delay the possible future development.

 

How?  Best Practices

1. Did the doctor give you medications. If so, take them.

2. Strenuous physical activity. Begin slowly.

3.. Strenuous mental activity. Did you get tested because you were having problems with courses. Perhaps there is a vocational achievement office that can help you? Were you told what your strengths were? Perhaps there is a similar field that does not require as much memorization?

4. Mediterranean diet. I also take Omega 3 and antioxidants.

5. Maintain or increase socialization.

Go below to Local Resources. Call your local chapter during normal office hours and ask if there are any support groups you could attend. 

And do keep coming back. We're here to tell you that it is not the end of the world and you are not alone!!!


Iris L.
Posted: Friday, August 23, 2013 10:09 PM
Joined: 12/15/2011
Posts: 18362


NoWay, any way you look at MCI/CI it's next to impossible to deal with.  But deal with it we must.  There's no one way, but an excellent way is to follow Mimi's advice and learn as much as you can and follow Best Practices.  Keep reading the message boards and posting. 

Make sure any medical contributing factors are treated to reduce their impact in your cognition.

Is vocational rehabilitation available to you?  You are in a difficult spot.  If you cannot be retrained for another occupation, you may have to accept a disability pension. But you would need a diagnosis of EOAD in order to get Compassionate Allowance from SSDI.  But you don't want to progress in your diagnosis for the sake of getting a disability pension.  Try to obtain vocational rehabilitation.

Did your neuropsychologist offer any guidance?

Iris L.

alz+
Posted: Wednesday, September 18, 2013 10:39 PM
Joined: 9/12/2013
Posts: 3608


Iris L, your experience is helping me adjust.

 

What would I like to hear? One woman I know casually passed me on a dirt road, out walking dog in woods. She asked if I'd be going cross country skiing this winter and I said I did not know as my memory problems were diagnosed as ALZ and I don't go off on my own without my dog, who is too old to make tracks in deep snow.

She embraced me and cried and said "I'm so sorry!" We just stood out there hugging. It was great.

 

In general my family is cool or angry, most people do not believe me as I am still verbal. My husband knows because he suffers from my changes.

 

What would be a good response?


alz+
Posted: Tuesday, September 24, 2013 10:31 AM
Joined: 9/12/2013
Posts: 3608


when people in my very small town, who now know I have Alz, speak to me very loudly. I have had hearing loss for 10 years, now they speak up?

 

My aunt told me to call her whenever I was low. I called and she seemed very angry. "Just what is your relationship to God then?!"

 

What? I told her someone was in the driveway and had to go. Realized she is 93 and showing signs of age related dementia. Not calling her anymore though.


Iris L.
Posted: Tuesday, September 24, 2013 5:39 PM
Joined: 12/15/2011
Posts: 18362


The general public are unfamiliar with people who have a cognitive impairment or early stage dementia.  We are at the frontier of a new paradigm for dementia care.  We can have input into our our care with our own desires.  We can reject what we don't like.   

 

It will be hard because we will be fighting an uphill battle. 


Iris L.
 


Mimi S.
Posted: Wednesday, September 25, 2013 9:37 AM
Joined: 11/29/2011
Posts: 7027


Yes, those of us in the Early Stage have the possibility to make a difference in the world's perception of Dementia. 

 

We can educate those in our immediate community.

 

We can contact our local Alz. chapter and let our voices be heard in their various outreach efforts.


BBobAZ
Posted: Friday, November 1, 2013 12:30 PM
Joined: 6/5/2013
Posts: 22


I used to get very angry, too, at these thoughtless comments.

 

Now, if people deny my diagnosis, I just smile brightly and say, Thanks!  That means my coping strategies are working well!

 

For those that say, oh that happens to me, too, I suggest they look at alz.org at the brief section that explains the difference between common aging changes and symptoms related to Alzheimer's.

 

Mimi S. is absolutely right, especially for early stage Alzheimer's, we need to become advocates and educate people.

 

As for doctors and psychologists making some of the comments reported here, I am an MD and I think those instances are disgusting.  No doctor who acted that way about any diagnosed condition or concern would ever be allowed to treat me.

 

 


Iris L.
Posted: Friday, November 1, 2013 12:50 PM
Joined: 12/15/2011
Posts: 18362


BBob, what was your field?  I was a pediatrician.

Iris L.

juliette
Posted: Friday, November 1, 2013 2:56 PM
Joined: 10/31/2013
Posts: 12


Unfortunately the comments that annoy me are almost always said in kindness. Ignorant kindness, but still.

 

1. But you seem so fine! Are you sure? (I am sure.)

 

2. Oh, I forget my keys all the time; it's just an age thing! (I'm 58, I know the difference between lost keys and having to say,"I can't find those car thingies. You know, the metal things that you use to make the car start?")

 

3.When I am searching for a "lost" word, and while I am trying to think, people rapid- fire words at me that they think might be the one. They never are the word I wanted, and the process just freaks me out more.

 

4.When someone tells me about some complicated future plan, like a Thanksgiving visit, and I specifically say, " I have trouble with calendars these days, just give me a minute to figure this out," and instead of waiting the 10 or 15 seconds I need, they immediately offer to text me the info, or email it, or whatnot. Gah!

 

Because they mean well, I don't bother trying to think of zingy come-backs and usually just ignore it, but they are definitely "Comments that irritate me!"


Mimi S.
Posted: Friday, November 1, 2013 7:49 PM
Joined: 11/29/2011
Posts: 7027


But I do appreciate the offer to put future dates in writing. My friends know it's a necessity.

For some reason my friends wait just the right amount of time before supplying possible correct answers. I might be doing something with my hand or head that signals I'm ready for help.


younghope1
Posted: Saturday, November 2, 2013 10:29 AM
Joined: 12/5/2011
Posts: 127


Mimi, I too used to be easily offended by these comments that people would make. And I learned that no matter what I tried to say in my defense, I just wasn't getting through to them. So, I now just always remember and sometimes even voice the comment, ignorance is greater than stupidty. You say this and this will really get their attention and getting them to think.

Tracy


John50
Posted: Saturday, November 2, 2013 4:14 PM
Joined: 3/14/2012
Posts: 140


Apparently most of us run in to the some of the same frustrating comments from people who I believe mean well but I guess it is just ignorance. Speaking out publicly is how I try to change some of the misconceptions people have hoping it has some small impact. The more of us that are able to do that the more we will progress. Someone posted a link recently that has some of the biggest offender comments, some of these are REALLY ignorant. http://alzheimers.about.com/od/earlyonsetalzheimers/a/What-Not-To-Say-To-Someone-With-Early-Onset-Dementia.htm I don't see the option about a link so that might not be clickable but it can be copied and pasted in to a browser.
Iris L.
Posted: Saturday, November 2, 2013 8:10 PM
Joined: 12/15/2011
Posts: 18362


Thanks, John.
http://alzheimers.about.com/od/earlyonsetalzheimers/a/What-Not-To-Say-To-Someone-With-Early-Onset-Dementia.htm

Perhaps we should make flyers and pass this out to people?  

Seriously.

Caregivers carry around cards to explain the odd behaviors or saying of their LOs with dementia.  Perhaps we patients should carry around little cards of things not to say to us. 

Iris L.

Mimi S.
Posted: Sunday, November 3, 2013 10:24 AM
Joined: 11/29/2011
Posts: 7027


A link from the above link:

http://alzheimers.about.com/od/communication/a/What-Not-To-Do-To-People-With-Alzheimers-Disease-10-Pet-Peeves.htm


Iris L.
Posted: Sunday, November 3, 2013 1:04 PM
Joined: 12/15/2011
Posts: 18362


That was a good article too.  Thanks for posting, Mimi. 

http://alzheimers.about.com/od/communication/a/What-Not-To-Do-To-People-With-Alzheimers-Disease-10-Pet-Peeves.htm 

Iris L.


jereo
Posted: Thursday, November 7, 2013 7:44 PM
Joined: 11/7/2013
Posts: 29


I'm wondering about a lifestyle that allows you to remain in early stage that long. What's you secret? What are you doing that might explain this phenonom?
Iris L.
Posted: Thursday, November 7, 2013 8:48 PM
Joined: 12/15/2011
Posts: 18362


Welcome to our online support group, jereo.  Most of us patients are working hard to remain in the early stages.  We follow a series of lifestyle habits introduced to us by Mimi S., called Best Practices.  These include: 

 

--taking medications as prescribed 

--eating the Mediterranean diet with antioxidants and omega-3 fats 

--exercising vigorously to tolerance 

--continuing to stimulate our brains with new learning 

--continuing to socialize.

We also get restful sleep and avoid stress.  Many use additional tactics, such as aromatherapy. 

Can you tell us more about yourself, jereo?  How are you doing? 

If you have questions, feel free to post and begin your own thread.  Keep reading and posting.

Iris L.
 


Mimi S.
Posted: Friday, November 8, 2013 8:18 AM
Joined: 11/29/2011
Posts: 7027


Hi Jereo,
Welcome to our group.
In addition to what Iris wrote.
Are you reading and reading everything you can find on the disease?  I'd start with alz.org and click all the links. I'd also go to your library and explore what's there. Download: Understanding the Dementia Experience.
Have you met the people in your local chapter yet? Do, if you can drive there, go and introduce yourself. If you don't have the phone #, go below to Local Resources.  
Call during normal business hours.

Do ask if there is a support group in your area for yourself. Unfortunately they are few and far between.
We hope you stick around.

jereo
Posted: Monday, November 18, 2013 6:53 PM
Joined: 11/7/2013
Posts: 29


Hi, Iris. Sorry for the delayed reply but I missed your post. I am 78 years old, live with my 68 year-old wife of 46 years, and have a 44 year old son. I'm doing quite well, all things considered. Now that I have recovered from my initial attack (took about a year) I'm really doing just fine. My brain works quite well except I experience dizziness a lot. I think that may be a hangover from a previous problem. I don't do any of the things you say we should do - I may have gotten this disease for that reason - bad diet, bad sleeping habits, etc.  But still, I think I'm doing very well.  I am married to a wonderful woman who loves me. We have a great son that we enjoy very much but no grandchildren. 

My life is quite boring - I literally live in my house, seldom going out. We occasionally go out to eat and I enjoy that. I socialize quite well with the people I meet and talk to. My mind is quite clear and I practice Lumosity two or three times a week and have a good set of scores there. I have a fairly high intellect but am very poor in the social sciences. I have always been a loner and that continues, I never was one to develop close friends. Still, I am a very pleasant and likable person who gets along well with everyone I associate with.

I recently had a problem regarding a woman at church and that problem was all in my mind and imagination. Some of my thoughts became reality - Sounds like a mental issue, doesn't it! I have to wonder if that is anywhere near normal in ALZ patients. I have been aware of memory loss, short-term wise, but have not observed any other mental issues except for the one just mentioned. I take that back, I have had some issues with flash anger with my wife, not frequently, just occasionally. I am now trying to observe my anger and restrain it.

I probably just gave you a lot more information than you wanted but I thank you for the opportunity to unload a bit. I am a quiet person who doesn't share himself with others very often at all.

Thank you for listening! I hope you reply and give me your thoughts.


Iris L.
Posted: Monday, November 18, 2013 9:12 PM
Joined: 12/15/2011
Posts: 18362


jereo wrote:

I recently had a problem regarding a woman at church and that problem was all in my mind and imagination. Some of my thoughts became reality - Sounds like a mental issue, doesn't it! I have to wonder if that is anywhere near normal in ALZ patients. I have been aware of memory loss, short-term wise, but have not observed any other mental issues except for the one just mentioned. I take that back, I have had some issues with flash anger with my wife, not frequently, just occasionally. I am now trying to observe my anger and restrain it.



I'm glad you posted back, jereo.  Some patients with dementia develop delusions, which are odd thoughts that spring up, seemingly from nowhere.  Also, anger and irritation can become issues.  You don't want these to get out of hand.  One of our members was taken to jail for fourteen days for some commotion.  After it was determined that he was a dementia patient, he was sent to a facility.  You want to avoid this.  You sound like you have a stable living environment, and that is good for you.

I'll give you advice that I gave alz+ on another thread.  One of our emeritus members, Alan in Colorado, used to tell us repeatedly that stress impairs our cognition by HALF!  We have enough going on to limit our cognition.  So we must make serenity a priority.

One of our members used to post the Serenity Prayer in all of his posts.  It's one tactic that may help.  We have to seek out ALL ways of remaining calm, and incorporate them into our lives. 

Communication between patient and care partner is vital.  Some writers are using the term care partner instead of caregiver. I like that better.  We're not babies.  We just need a little help.

Iris L.

jereo
Posted: Tuesday, November 19, 2013 1:09 PM
Joined: 11/7/2013
Posts: 29


Not everyone has full knowledge of Alz! That makes it your responsibility to educate them. They should be advised about the stages of ALZ and that the earliest stages are not far removed from the old, fully healthy person. I am 18 months into ALZ now and am just as bright and alert as I ever was. I am cautious, though, being aware that my brain could change at any moment and cause me to start doing irresponsible things. This is, indeed, a hideous disease but in the early stages one can continue with life pretty much as it has been. Just don't expect others to know this. Educate them!
 
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