“We knew something was up when Mom told this weird story about Dad’s penis at a party,” a woman told me.
And it wasn’t just any party. It was a party with friends from church.
And this wasn’t a woman who was known for disclosing inappropriate details about her life or her family’s lives. In fact, she was a private person who rarely talked at parties. She wasn’t known for talking about her husband’s penis in public, particularly when her pastor was present.
Her family was horrified. And embarrassed.
There had been some other signs that something was just off.
She had been at the grocery store and spotted an old friend she hadn’t seen for years.
“Wow! I barely recognized you because you put on so much weight!” she exclaimed.
Her husband was mortified. It was completely out of character…and completely embarrassing.
At home, she stopped shutting the bathroom door–even when they had company. She sometimes walked around the house without a shirt on. When her husband told her to put a shirt on because some friends might be stopping by, she refused.
Her husband made excuses for why they couldn’t participate in social events. He didn’t know what was wrong with her, and he didn’t know what to say when she did inappropriate stuff. He got sick of being embarrassed so they stayed home.
After a couple years, she was diagnosed with Frontotemporal dementia. She was in her mid-50’s at diagnosis.
Now her two daughters had come to one of my community presentations. As we discussed their mom’s symptoms, they had a question I really couldn’t answer.
“How do we stop Dad from being so embarrassed?” they asked. He didn’t want to take her to the store, to social gatherings, to the movies…he had even suggested cancelling family Christmas because he worried she’d say something inappropriate to their grandkids.
I have a stock answer about accepting the changes dementia brings and not being embarrassed that our loved ones are impacted by a disease.
But when your wife is telling stories about your penis and pointing out how much weight people have gained, none of this advice is helpful. It can be embarrassing.
When people approach more advanced levels of dementia, they may live in nursing homes or memory care units. They might need 24/7 care. And it may be apparent upon first glance that something is not quite right.
But most (yes, most) people with dementia do not live in institutions. They live in the community with family or even alone. They may be living with only one foot in Dementialand. They may teeter tot between Dementialand and the reality that the rest of us know.
When these people say inappropriate things at parties and in the grocery store, we may not identify them as a people with dementia. We may just think they are rude and weird. And family members and caregivers struggle with how to negotiate these situations.
There are some strategies I suggest. For instance, a man I knew whose wife had Alzheimer’s carried slips of paper that said in handwritten letters, “I apologize if my wife has inconvenienced you. She has Alzheimer’s. Have a great day and God Bless!” (For the record, that’s not exactly the wording I might recommend, but I appreciate the idea.) A quick email before a social gathering encouraging people to “roll with the punches” can work in some situations.
But how can we keep Dad from being embarrassed when Mom is talking about his penis at a party? I’ve got nothing.