I recall sitting with my neighbor, Joe, as we waited at the local clinic for some medical tests he required. Joe looked up, saw a man pulling an oxygen tank behind him, and yelled excitedly, “Look! He’s got a golf cart!” Since Joe had loved playing golf and his sight was poor, he saw what he “knew.” A golf cart. The man walking by was embarrassed. I simply smiled at him and talked to Joe about his years playing golf.
This incident was a little embarrassing, but not nearly as embarrassing as other incidences that I’ve experienced. Several of my loved ones lived in a nursing home just blocks from my own house, I visited them daily. These visits presented me with a valuable window into dementia behavior, some of which I’d have trouble describing in a polite manner. Below are some incidences that can be published without censorship:
Person with Dementia: (upon seeing their new agency caregiver) “She’s a foreigner!” (Or worse yet, a racial slur.)
Response: “Yes, isn’t it exciting to see so many people working together to help each other. It’s fun to be exposed to more cultures.” If more grumbling or even outrage is shown, such as the refusal to let the agency caregiver help, we need to remember that likely this isn’t the first time the nursing home employee or in-home agency caregiver has been insulted in this way. Most of them learn to handle it with grace. When I had something similar happen with an elderly friend of mine, I just apologized to the employee and then stayed around and chatted with them both for while. My elderly friend eventually grew more comfortable with the new caregiver and allowed her to do her job. The happy ending was that this elder and the caregiver eventually became good friends.
Explanation: Many of our elders grew up in much less diverse communities than we have today. In the Great Plains area where I grew up, most people were of Scandinavian or Germanic extraction, so it was a “white bread” society. Oh, we had some people of color as professors at our colleges, but many elders grew up rarely seeing anyone who wasn’t light skinned. Most of these people aren’t racists. They simply haven’t been used to interacting with people of color.
Now, in our racially diverse nation, many caregivers working for in-home care agencies, assisted living facilities and nursing homes are Native American, Hispanic, African-American, and new immigrants from any number of countries. Many have heavily accented language. I was fortunate in that both of my parents greeted these caregivers with open arms, enjoying the variety in their lives. However, I saw and heard many elders using racial references that were, to say the least, disrespectful. Again, it doesn’t necessarily mean the people are racist, though, of course, some are. Many, however, simply have lost their short-term memory and whatever inhibitions they may have once had. So, when they see someone of another race, they blurt out labels that they heard as youths, thus embarrassing everyone involved.
Person with Dementia: “That woman is throwing away food! That’s a sin! Look at her dumping her dinner in the garbage!”
Response: “That woman is sick and can’t eat very much. Everyone here has as much food as they want.”
Explanation: Many of our elders grew up during the depression. Some of their parents came to this country prior to that when people were starving because of famine in the “old country.” They feel in their core that any waste of food is sinful. The memories that they retain are often from decades back, so they panic if they see that food is being wasted. They may actually fear starvation.
Person with Dementia: (generally a man) pinches a woman or otherwise acts out sexually: “Nice butt!”
Response: Calmly say, “That’s inappropriate, Dad,” or something to indicate that the action is not acceptable. It won’t help to scold, however. Apologize to the person affected and then if possible move your dad away. Explain to the person that dad has Alzheimer’s and his actions are the result of the disease. If you can’t defuse the situation by moving him away, just allow the affected person to handle it. If it happens to a professional caregiver, they are trained to handle these challenging Alzheimer's situations.
Explanation: Stay calm and realize that this behavior is caused by the disease. Dementia has stripped your dad of his inhibitions and he really can’t help it. Try not to over react from embarrassment.
When these and other uncomfortable situations occur, we are embarrassed for ourselves and for the person our elder once was. Learning that we aren’t alone in enduring this public embarrassment helps, so I’d suggest talking with other caregivers, either in person or online, for support. When we share our stories with people who understand, our pain and embarrassment doesn’t take on a life of its own. We can gain perspective if we communicate with other caregivers who’ve been through similar situations.