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Strange reaction from friends when I tell them of my diagnosis
Shayjayoh
Posted: Monday, July 1, 2019 11:01 AM
Joined: 3/4/2019
Posts: 8


I want to know if anyone else has this or something similar happen to them.  On two separate occasions, I have told friend that I have dementia to explain ahead of time why my behavior might seem a little off.  Both friends, on these separate occasions, have said to me, "well we all have dementia".  I have been pulled up short by these responses and have no idea how to address this.  I end up sounding offended, which I am a bit, and say "not everyone has a diagnosis".

Anyone else?  What do you do?

 


Iris L.
Posted: Monday, July 1, 2019 12:24 PM
Joined: 12/15/2011
Posts: 16084


I was told by my best friend that I talked too much about my memory loss, because " we all have senior moments."  Her lack of support and rejection was part of the reason for my plunge into a deep depression for several months.  I got out of the deep depression with the support of the members and Care Consultants on Alzconnected.  Because of her reaction, I choose not to disclose about my memory and cognitive difficulties to anyone that I know.  There is just too much risk to my mental health.

Iris


Iwish
Posted: Thursday, July 4, 2019 11:43 PM
Joined: 7/2/2019
Posts: 6


It is possible that your friends are simply feeling overwhelmed.  Alzheimer's is a powerful diagnosis and it can take time to wrap one's head around it - even for friends. 

If they are feeling overwhelmed, they are probably also feeling anxious. And if they are feeling anxious, they might react by trying to minimize the situation.

It may also be that they want to help but simply don't know how.  Reassurance is a very common way people try to help.  So even though it doesn't feel appropriate to you, they may be trying to ease your fears and theirs - the way a parent reassures a child about the boogieman in the closet.

Be patient with your friends, they probably are simply at a loss as to how to react.  It they really care about you, their concern could possibly make it even harder for them to figure out the right response.


creeky88
Posted: Tuesday, July 23, 2019 1:47 PM
Joined: 7/12/2014
Posts: 35


Yes, same here. I have 'Unspecified' Dementia(Pet Scan 2014)but just recently told 4 friends & had lunch w 2 last week. They said I'm obsessed w Dementia, you seem fine & they don't know for sure until you have an autopsy. 

 I also agree they might feel they're being supportive.

I also live alone & there are no support groups in a city of 350,000??

I remember your name Iris, from ~5yrs ago! I'm not sure what my screen name was, maybe creeky? idk

Alz.org(& any other site!) is so 'big' for me to navigate, but I'll get there. I'm sooo glad I found this thread! 

Hope to be able to find ya'll again!


Michael Ellenbogen
Posted: Tuesday, July 23, 2019 2:00 PM
Joined: 11/30/2011
Posts: 2384


I always have to tell them twice in order for them to get it. Because when they respond I do too. I say I really do have it and then they are no longer sure how to respond as now it is not just a joke as they first think. 


Iris L.
Posted: Tuesday, July 23, 2019 8:45 PM
Joined: 12/15/2011
Posts: 16084


Welcome back, creeky.  I take it very badly when my friends are dismissive of me.  Very badly.  So I have decided not to disclose anything serious about myself except to a rare few. I also live alone and do attend a dementia support group, but it appears to be less and less supportive.  I have gotten the most support from my peers and the caregiver members here on these boards.


Creeky, years ago I asked if there were other members who are on a dementia journey alone with no natural caregiver.  Some PWDs live alone, but they have a child or sibling or other relative to help them.   My closest relative is 3000 miles away from me and he is still working.  I won't put a burden on him.  I have decided to make other arrangements.

 

Michael, even though you learned that you do not have Alzheimer's Disease, do you still describe yourself that way to the public?  You have a public platform, Michael, but I don't see the benefit in disclosing to everyone we know.  They can't help and they can be hurtful. No one is going to invite you to move in with them.


Iris


Michael Ellenbogen
Posted: Wednesday, July 24, 2019 6:28 AM
Joined: 11/30/2011
Posts: 2384


I usually say I have dementia but most don’t know what that means. When I tell them, I have FTD or Semantic dementia they have no idea on what that means or is. I have been saying I have Alzheimers for so long that I keep saying that too when I did not mean to say it but when I did people at least know what I mean so I tend to just say that at times. Hope I am making sense. To be honest with you I don’t know if they will ever know what I have until I am dead.  One of my doctors still insist I have it so officially I am still listed that way and the other. 


Iris L.
Posted: Wednesday, July 24, 2019 11:43 AM
Joined: 12/15/2011
Posts: 16084


I understand, Michael.  For the public, the only dementia they know is Alzheimer's Disease.  You are still raising awareness, so that's a good thing.

Iris


BadMoonRising
Posted: Thursday, July 25, 2019 11:30 AM
Joined: 4/22/2017
Posts: 260


Give your friends some time. I know I have questioned my own diagnosis, even after reading the Amyloid PET reports and actually viewing my scan. My thoughts go something like this:

"Did the radiology department accidentially switch scans with that of another IDEAS study participant? That stuff happens all the time. Are the z-scores really that high? Maybe the z-scores are not correct, I mean, they can't be THAT high right? Because, y'know, there's only age consistent atrophy showing here. What the F is THAT all about?!"

 It has been several years and I still have this internal dialogue. I'd explain to my friend that there are different stages in dementia, I am in the early stage and that I'm just worried about my future. The ball is then in their court. 


creeky88
Posted: Thursday, July 25, 2019 4:14 PM
Joined: 7/12/2014
Posts: 35


Perfect response...I have it...period. Thanks!