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Telling people about LO's condition
dutiful deb
Posted: Sunday, January 29, 2012 6:52 PM
Joined: 1/1/2012
Posts: 1896

At what point is it best to reveal that your LO has dementia?  People are starting to notice my mom's unusual behavior and many are expressing concern. The only people who know about mom's condition are myself and my sister (who lives in another state), and one of Mom's close friends. No other family members or friends know.  The doctor has talked about the diagnosis with my Mom and I, but my mom seems to have blanked it out and doesn't know she has VaD. She thinks she just has a little trouble with her memory.   I am afraid that if a lot of people know, then I'll be plagued with unsolicited advice, have family members try to step in and take over, and I worry about the consequences to my Mom above all since she doesn't know she has dementia.  On the other hand we have a wonderful circle of friends, and there are times when I feel lonely or would like to get someone else to help my mom so I can have a break,  but  I am still very apprehensive about telling anyone. Is that normal? Why do I feel this way? I am not ashamed or anything like that, but just cautious. I don't know if that's wrong or right.  I feel like I have put on my Pinnochio nose and it keeps on growing...the birds will be building a nest in it soon!
Posted: Sunday, January 29, 2012 7:00 PM
Joined: 11/30/2011
Posts: 740

Hi, Deb.  I think part of why you don't feel comfortable telling others is that it will make the diagnosis a bit too "real" for you.  Or perhaps, in some ways, you feel you're "protecting" your mom.

Then again, maybe you're apprehensive because you've read about the problems some of us have had. 

Are your fears associated with specific family members or neighbors?  Maybe discuss this with your sister, and come up with a "short list" of those nearest and dearest to tell.  Ease your way into it gradually.  Don't tell the potential trouble-makers quite yet.  Build up your support base first.

I think you know that it's time to start telling others, since you know people are beginning to notice her behavior.  So ... begin the process while you still have some control over it.

You do need to have people to talk to, and people who can help out to give you a break.  It's way past time to be telling the special people in your life, from that perspective.
dutiful deb
Posted: Sunday, January 29, 2012 11:49 PM
Joined: 1/1/2012
Posts: 1896

JAB, you totally hit the nail on the head. Everything you said was right on. 


 As you correctly guessed, there is a family member from whom we anticipate problems. Even my mom knows that this person could cause difficulties, which is why she is willing to give me POA. I have it financially, but not medically. I've contacted an attorney who specializes in Elder law, and am not planning to say anything to this member of our family until that is taken care of. Unfortunately, it's my own brother...sad that I have to worry about that, but my Mom and sister both know how he is and both are on board about my getting POA. Sis knows that if something happens to Mom, I may need to make an quick decision and trusts me completely. We speak a lot about Mom's condition & care. While Mom doesn't comprehend that she has dementia, she acknowledges that she is 76 years old and can, for example, fall and break a hip or have a major stroke and end up hospitalized. She is worried that my brother will try to step in and take over in that kind of situation, or cause problems for my sister and I. During her moments of lucidity, she's made her wishes clear.


I like your advice regarding easing into telling people gradually, and building up a support base.

Mom and I attend a small group Bible study together and recently she told the small group of ladies about an incident that was always considered  a family "skeleton in the closet" that she would never have normally talked about, nor would she have let any of her children get away with revealing. Fortunately it was a close-knit group of our friends, so it wasn't like she was telling strangers, but still!

Thank you for your advice; I don't know how you were so effectively able to crawl into my skin like that, but you did. I will be heeding your advice and will let everyone know how things go.

Posted: Monday, January 30, 2012 8:35 AM
I learned from experience, that it doesn't do much good explaining to family about mom's disease.  Yes, they know she has AD, but they don't understand it.  Nobody visits her anyway.  If there were somebody who would take genuine interest in why she is acting differently, I would kindly explain what I know about Alzheimer's.   However, I also feel it's a private matter and not all details need to be explained of what mom does or doesn't do.  People don't want to listen about this disease.  Just like when you talk about cancer, people change the subject or act like they don't listen.  Unless it's someone who truly cares, that's a different story.
Posted: Monday, January 30, 2012 10:21 AM
Joined: 12/4/2011
Posts: 19721

We make no secret of what is going on. If someone is close enough to ask  a brief  statement that DH has some memory lapses is all that needs to be said. 


The closer the person is to us the more they observe and they usually judge for them selves just how "serious" the problem is.


Ours is a diagnosis of far...and I have shared that info if/when it seemed appropriate.


After you get your legal ducks in line I would probably have a sit down with your brother. To leave him out of the loop might cause a reaction that could cause some real problems.