It isn't unusual for people with Alzheimer's to behave inappropriately in public at times. And often that leads to embarrassment for the caregiver.
For example, the person may become agitated and make scenes in public, causing people to stare. This could include behaviors such as arguing loudly with you or strangers, even about inconsequential matters.
Furthermore, Alzheimer's patients tend to lose their sense of inhibition and may say rude things to people. Sometimes a person who always demonstrated extreme politeness in public may loudly curse at you or others. In other cases the person may make racist remarks -- something they never would have done before.
I was a caregiver to Ed Theodoru, my Romanian soul mate of 30 years, when he developed dementia. Sometimes I was so embarrassed by what he said and did that I actually pretended I wasn't with him.
Ed often made scenes in restaurants. Once he complained very angrily to the waitress that his food was not hot enough and made her take it back to the kitchen. I'm pretty sure my face turned red.
During the same dinner, he commented loudly that a child sitting nearby with his parents was too loud and he wanted to change booths. Needless to say, the parents heard him. I pretended I had not heard him.
Another time he became agitated about having to wait longer than usual in a doctor's waiting room. After a few moments he got up and stomped over to the receptionist and declared he wasn't going to wait much longer. Everyone there stared at him. I wanted to become invisible.
Ways to Deal With Your Embarrassment
I was Ed's caregiver for the seven years he had Alzheimer's. During that time I developed some approaches to dealing with my embarrassment. Here is some advice, based on my experience:
1. Take the person to places with fewer people around. This could include things like going for a walk in the park rather than attending a crowded art fair. That way if your loved one does make a scene there won't be many people nearby to witness it.
2. Another approach is to entertain friends at home instead of meeting them at restaurants or movie theaters. Ed tended to behave much better when in his own home. I think going to a restaurant was simply too stimulating and confusing for him.
3. I once read about a caregiver who passed out little printed cards that read. "My loved one has Alzheimer's -- Please excuse her behavior." This is not one of my preferred methods to deal with the problem. I feel it would be demeaning to the person with Alzheimer's. Plus, depending on how alert the patient is, he or she may realize what you are doing and (rightfully) become angry.
4. Here are some methods I discovered could sometimes prevent outbursts:
-- Don't even bring up subjects that might make the person agitated
-- If the person does get upset, distract him or her by rapidly changing the subject
-- Agree with whatever the person says (unless there's a compelling reason not to)
-- Do not argue with the person
-- Do not try to reason with the person
5. If all else fails you can reduce the frequency with which you take your loved one out in public or, if the behaviors are too extreme, limit excursions to essential trips, such as doctor's appointments.
Finally, try to accept the fact that you can't control your loved one's behavior and that it isn't their fault or yours. Realize you love the person despite the behaviors, which are simply a manifestation of the disease.
For more about Alzheimer's caregiving you can read my book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which contains a wealth of information for Alzheimer's caregivers.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.