JOAN’S BLOG – MONDAY, FEBRUARY 25, 2008 – EMBARRASSING PUBLIC BEHAVIOR OF AD SPOUSES

There has been quite a bit of talk about embarrassing public behavior of AD spouses on the message boards the past few days. It is an important and difficult situation that needs to be addressed.

As you know, all of the opinions expressed in my blogs are mine, and mine alone, unless otherwise specified. I mention this because it is my opinion that embarrassing public spousal behavior is worse on us than if it were our parent. If Mom or Dad is acting odd or inappropriately, it somehow does not reflect upon us the same as when it is our spouse.

To clarify – If I were out to dinner with a date, and he was rude, loud, and obnoxious to the wait staff , drank too much, argued about the bill, and stumbled out of the restaurant, with me following behind, I would be embarrassed to death. I would feel that his behavior reflected on me; that those witnessing the incident would think that I condoned such behavior; engaged in it myself at other times; or was a complete idiot for dating him.

When you are in public with your spouse, whether he/she has AD or not, I think the same scenario applies. You are embarrassed and concerned that their behavior reflects on you. Maybe you are more compassionate and tolerant than I, but this is how I feel.

Depending on the stage of the disease, behaviors vary widely, from uninhibited talking to children and strangers; loudly expressing a bathroom need; using childlike phrases, such as “wee wee”; pointing at and making fun of people who look different; poor table manners; throwing temper tantrums if they do not get what they want; rambling on with no ability to end a conversation; to flying into rages at authority figures. Now what does that sound like? A child, of course.  Alzheimer’s patients progress through developmental stages just as children do.  Unfortunately, the progression is backwards. (CLICK HERE for detailed Blog on childish behavior). Those of us who expended all of our patience on our children’s developmental phases are not in the mood for repeating the process with our adult spouses. AD does not care how we feel – we’re in it and we have to deal with it.

In the beginning stages, temper tantrums and rages at authority figures have been reported as fairly common. Very early in the disease, before we knew what was wrong, Sid shocked me to the core when he caused a scene in a store because the clerk was poorly trained and could not answer his questions.  I was stunned to hear him yelling at the clerk; telling him he was stupid; that he would never shop in that store again (to the relief of every employee witnessing this scene, I am sure). What confused, angered, and upset me more than the scene, was that Sid could not be reasoned with afterwards. He absolutely could not understand that he had done anything wrong. Two years, and many incidents later, I learned that AD patients lose adult reasoning ability.

For these earlier stages, I recommend “Warnings” . Just as you would do with a child, I warn Sid ahead of time if we are going into a situation that may unleash an angry outburst on his part – an uniformed store clerk; a long line at a busy store; a problem with a restaurant reservation; a TSA guard making an unanticipated request. I tell him we may encounter one of these problems; to please stay calm; and that I will handle the situation. As of now, this does diffuse situations that could turn ugly. I understand that there will come a time when warnings will mean nothing to him.

For later stages, when you are dealing with pointing, speaking inappropriately; touching strangers; and bathroom issues, there will be decisions that only you can make. Many of you have the upbeat attitude – “If people don’t like it, that’s their problem.” You can keep a supply of the “Alzheimer Explanation Cards” on hand, distributing them when necessary.  It also helps to go out with a group, so there is always an extra hand or two to take your spouse to the bathroom or outside to calm down if necessary.

Or you may choose, as some of you have reported, to stay home rather than risk public embarrassment. If this is your choice, I would urge you not to isolate yourself. Leave your spouse in capable hands, and go out with friends. It would be very easy to withdraw into isolation with your spouse if you are too embarrassed to take him/her out in public, but as we have expressed many times - what a tragedy it would be for AD to claim two lives.

To answer the questions posed by those of you who are new to this – Yes, inappropriate public behavior is part of Alzheimer’s Disease. To those of you who are old hands at this – we welcome any and all suggestions – please post under the existing Message Board Topic – I have a question about public behavior.

Feedback to joan@thealzheimerspouse.com

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