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I Have Alzheimer’s or Another Dementia
Comments that irritate me.
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!
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.
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,
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.
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.
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.
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, 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?
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.
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.
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.
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.
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!"
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.
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.
A link from the above link:
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.
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.
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.