Dealing With Embarrassment When Your Loved One Has Dementia
A caregiving guide for navigating around delicate situations with dementiaby The Candid Caregiver
Dear Candid Caregiver: My dad enjoys going to the park and watching kids play. Since I try hard to give him the best life he can have considering that he has Alzheimer’s disease, I find this a positive experience. The problem is that there are times when Dad is glaringly inappropriate and I don’t know how to handle these moments.
As an example, last week, he saw a child in the park dipping his toes in a pond. Dad began lecturing the child about not “falling in.” Of course, the child was confused and the mother seemed upset. I explained dad’s situation to the mom and she was kind, but I was embarrassed. So far, nothing has gone beyond that kind of embarrassment, but I am afraid that he may say or do something one of these days, especially when children are present, that causes someone to call the police. I know that this isn’t his fault but how do others deal with similar situations?
Sincerely, Embarrassed Daughter
Dear Embarrassed Daughter: I do understand. I can tell by reading your note that you are on top of things, so you understand that this tendency may get worse, and that’s scary.
Just to show you that you’re not alone, I will share one of my experiences. I was waiting with my 85-year-old neighbor, Joe, to get some lab work done. A woman walked by who was definitely overweight. Joe looked up, pointed, and screeched at full volume, “There’s a fat one!” To make matters worse, she walked back to her chair and he hollered, “There she is again!” So, yeah, I know embarrassment.
Your dad’s dementia is part of his behavior at this point, but some of it may be just the father (or grandfather) in him who was anxious about the child getting hurt. Without dementia, he may have mentioned some concern to you, but because dementia seems to take out social filters, caregivers are often faced with awkward to downright frightening situations.
In this particular case with Joe, I thought that any attempt to apologize to this woman would have only focused more attention on her. I may have been wrong and still wonder if I should have said something to her. This was an unusual case, though. Generally, apologizing and explaining are helpful.
Informal ID cards for people living with dementia
Over the last few years, a brilliant idea has grown into a movement, an option now widely accepted. Cards, rather like ID cards, are given to people who may be affected by the actions of someone living with dementia. These cards are available for caregivers, but they are also available for people living with earlier stages of dementia who are still quite independent.
The caregiver’s cards can say something like, “My father has dementia and can’t help some of his social behavior. He doesn’t mean to offend. Thanks for understanding.” The cards for independent people living with dementia say something like, “I’m sorry I’m slowing the line, but I have dementia. Please be patient.”
You can buy these cards or make your own. I don’t know where this idea started – most likely with a caregiver or caregiver group – but it’s brilliant. I suggest that you look into buying or making some of these cards.
Distraction often works with dementia
Telling your dad that he’s embarrassing you isn’t a good approach. He probably won’t understand what he did wrong, so nothing is to be gained and his fragile self-esteem may be harmed. Apologizing like you did is a good idea – when possible. Then try distracting your dad. After handing out a card, if you choose to do this, you could say (in the park), “Dad, look at those slides! Aren’t they wonderful?” Just be creative wherever you are.
Regarding the rage of Alzheimer’s
Greg O’Brien, who lives with early onset Alzheimer’s disease (EOAD) wrote an article for Psychology Today titled Seeking Redemption: The Rage of Alzheimer’s that is one of the most powerful written pieces I’ve read in a long time.
In the article, O’Brien, a gifted man in many ways, describes an outburst that he had at an airport where he and his wife were collecting their tickets from the machine. This incident very nearly got them thrown out of the airport. O’Brien’s behavior stemmed from internal rage caused by his impaired brain function and the emotional responses he has to frustration and confusion. The article is well worth reading, as his O’Brien’s widely acclaimed book On Pluto.
Other examples of embarrassment with dementia
I’ve witnessed people in nursing homes bullying their fellow residents who can’t finish their food. Often this stems from growing up when food was scarce. You could explain to the complainer that this person who is throwing away food may be sick and therefore has a hard time eating, but the lesson seldom sticks. It’s heartbreaking to see and hear this behavior, but distraction seems to be the only thing that works.
I’ve also witnessed overt sexual behavior, such as the person living with dementia saying loudly, “Nice butt!” or even grabbing a woman’s breast.
Perhaps the worst are racial slurs. Many of these elderly people truly aren’t racist, but they grew up in an era where, in some parts of the country, they rarely saw anyone of color. In other parts of the country, the situation may be the reverse. Segregation ruled. Sadly, this background can come back at older adults living with dementia even though decades of living had changed their views. This can result in discomfort around people of a different race or even lead to spewing slurs.
I can understand, Embarrassed Daughter, that your situation in the park must have been very upsetting. Support would be so helpful now, so I suggest that you start exploring support groups in your area and online.
Additionally, research and read all that you can about being a care partner to someone living with dementia. You have a long journey ahead of you and the better educated you are, the more smoothly it will go. And do buy or make some of those cards.