Nothing I have said to a group of Alzheimer spouses has ever elicited more head nodding and groans of “Yes! Yes!”, than when I say, “If one more person says to me, “Well, I don’t see anything wrong with him, Joan, I am going to scream!”

It happens all of the time to me, to you, and to scores of other spouses whose AD husbands or wives are in the early to mid stages, and are able to “hold it together” in public, but fall apart when they get home. It makes us all look like liars, drama queens/kings, and complainers.

Even my husband’s first neurologist said it was “me”. I was “projecting” the problems I saw in the kids at school onto Sid.
Why does this happen? Why do they appear “normal” to outsiders?

The reason is that those people are not with our spouses 24/7. They see them for a brief period of time in a social situation, in which the AD person is able to carry on a conversation – the person with whom they are conversing has no idea if half of what they say is inaccurate. They have no idea how much energy our spouse is expending in trying to follow the conversation; hold their temper if something upsets them; maintain their focus; and remember what their conversation partner has said. According to one of my social workers, there is even a name for this phenomenon – “company manners”.

Often when you return home from one of these social occasions, your spouse is so exhausted from the effort expended trying to appear “normal”, he/she either falls asleep or “lets loose”, displaying frustration, anger, and tantrums.

So as if we don’t have enough to deal with, people think we’re crazy.
You know what? I’m taking a lesson from Sid’s neurologist and my social workers. This one, I am “letting go”. It doesn’t matter what others think. We still have to deal with the effects of the disease at home. Eventually all those doubters will see the truth.

Close relatives, such as siblings and adult children, are a different matter. So many of you have written to say that your adult children who live far away, and even some of those who live close by, as well as your spouses siblings “see nothing; hear nothing; and you just wish they would “speak nothing”. You can try everything – send them the neuropsychology report; send them a list your spouses behaviors and difficulties; ask your doctor to call them; send  your spouse to them for a visit – but in the end, they will believe what they want to believe, and as always, you will have to deal with the situation you have been given.  That’s what we do – we deal the best we can. We have each other for support and understanding!

Feedback to joan@thealzheimerspouse.com