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Family Denial
Pat the Brat
Posted: Friday, October 18, 2013 2:31 PM
Joined: 10/17/2013
Posts: 10

How do you get your family and close friends to accept your memory loss and possible EOAD?  Some people close to me think I am losing my mind even entertaining the thought of EOAD.  They like to attribute my symptoms (which they are also noticing) to blah-blah instead of the real problem at hand.


I am frustrated knowing what is gong on with me but difficulty in trying to get help sorting all this out.  My Mom, her mother and maternal aunt all died with Alzheimer's.  I used to work as a Registered Respiratory Therapist and have worked with Alzheimer's patients before.


It is so very scary to know what I have in store for me.


Thanks for letting me vent.



Iris L.
Posted: Friday, October 18, 2013 4:12 PM
Joined: 12/15/2011
Posts: 18719

I'm still trying to figure this out.  Let me know if you come up with something.

I have resolved to deal with this on my own, except for this message board.

My advice to you is don't say anything about your memory loss to people.  You will quickly lose friendships and long-time friends will abandon you.

Iris L

Posted: Friday, October 18, 2013 4:51 PM
Joined: 12/5/2011
Posts: 127

Pat, there is no answer for what you are seeking. I have been seeking understanding and acceptance from my brothers and sisters ( have 6 of them) for 12 years now and unfortunately even after what all the tests show, they have chosen to leave me out of the family. They have labeled me as "crazy" and treat me as such. So, that is why it is just me and my son, struggling through this journey day to day. In the beginning it was very painful and in time even after my local chapter sat down with them and my neurologist wrote them a letter addressing the diagnosis and what to expect, they still live in a world of complete denial while my son and I have traveled many paths. So, the best advice I can give you is to not fret over them, it is their loss in the long run, not yours. Stay active, educate yourself, become involved in your care and most of all be kind to yourself.


Posted: Friday, October 18, 2013 5:42 PM
Joined: 3/7/2012
Posts: 2791

I'm sorry you are here on the boards, but I assure you many many MANY of us have dealt with or are dealing with the exact same situation.  Family denial, oh how painful that is to deal with.


Personally I believe the first thing you need to totally accept is that you have no control over them or their reactions.  What you have control over is you.  It is difficult for family members to accept this disease, its scares the poo out of them.  Therefore they act like its not happening, then they don't have to deal with it.  None-the-less it is painful, very painful to go through.


Have you been to a neurologist?  What tests have you had? Are you on any medications?  What about the Best Practices, are you following that?  These are the things you need to focus on for you. 


Everyone doesn't need to know you business.  You will never convince them, your only frustrating yourself.  Will you loose friends, probably - we all do.  Will family remove themselves - sure, that happens.  Your trying to 'include' them and they are clearly sending you signals they don't want to be included.  Accept that and focus on you.  I know its difficult to do and hear - but I'd rather you focus on you and getting you the help/support you need than hear how family isn't accepting.





Posted: Monday, November 11, 2013 10:31 PM
Joined: 11/11/2013
Posts: 2

My dad has EOAD at 58. We do still get some push back from people trying to suggest 'Maybe it's this? maybe it's that?' Which is hard to not find annoying, as if we didn't try to sooooo hard for it be something reversible, or something that could be cured. I mean he's had blood tests, neuropsychological testing, MRI, PET scan... and seen multiple neurologists, and he's already been approved for SS disability. It just is what it is.

I think the thing that's been hard for us is that people tend to fall into one of two camps. 1) they talk to him and don't think it's that bad. "why can't he drive? he seems fine to me." OR 2) they think he must be totally crazy and be a constantly confused lump in a corner that doesn't know who everyone is. It's like no one understands that this disease happens in stages... he didn't just wake up one morning with no clue what's going on.
Iris L.
Posted: Tuesday, November 12, 2013 1:29 AM
Joined: 12/15/2011
Posts: 18719

Limit those people's access to your Dad.  Why let him get more upset by clueless people?  I've had to prune my "friend" list.

Iris L.

Mimi S.
Posted: Tuesday, November 12, 2013 9:26 AM
Joined: 11/29/2011
Posts: 7027


I read your profie. Basically screw that neurologist.

With your insurance do you need a referral?

If so, get one from your family doctor. But do your homework and find where you want to be tested. 

If not, find the best place you can. This is usually a university/teaching hospital or Memory Clinic. You want a place where diagnosing not only dementia, but the type, is what they do.

Your local Alz. chapter (go to Local Resources, below and call during business hours.) should be able to talk with you about places. Even if you have to travel and stay overnight, you need the best. (If you have to travel a good deal, be sure to tell this to the person doing the scheduling. They might be able to schedule more on one day. But, if you need a break every hour, or whatever, be sure to make that known.)

As soon as possible, ask your local library to get for you a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ.

And yes, you may be screwed. However, as a person with AD, I prefer to say: yes, I will die. Not today; not tomorrow and maybe not for a long time.

There are several of us on these boards who are very proactive in our own care. I began by reading everything on line and in our local library. I'd suggest you begin with the site. Click every clickable button.

The first book I picked up at my library was I'm Losing My Mind by Tom DeBaggio. I still remember feeling that: wow, he wrote that book after he was diagnosed. This is not the end of my life!

And then we examine our life style. Various pieces of research keep confirming the value of what we call Best Practices.

1. Take meds as prescribed. I also take Omega 3 and antioxidants. No smoking. Limited alcohol, although some red wine has benefits. Some see benefit in aromatherapy.

2. Vigorous physical exercise. Your goal is to get your heat  beating faster than normal for a period. [What's good for the heart is good for the brain.]  Research has shown that vigorous exercise builds new brain cells!

3. Vigorous mental exercise. A variety is best. 

4. Mediterranean diet. Search the internet for more on this.

5. Maintain or increase your socialization. Most of us find that we are not comfortable in noise and large groups.

I know your are scared because of your memories of your relatives and the patients you worked with.

However, many of us on these boards are working hard to get before the public a new image of dementia. One that shows the face of those of us in the Early Stage of this disease, who are able to slow our progress further down to a slow crawl.

Yes, there are things that may be impossible or difficult for us. We concentrate on what we can do.