Jake is a beloved family man who pastored a large congregation for many years, before his Alzheimer’s diagnosis and increasing difficulty with speaking, remembering, and organizing led to his retirement.
His family was supportive, and Jake received loving care from his wife and children. He started attending an adult day program when the family needed to attend to their jobs and children, and Jake enjoyed being around other people his own age.
The program team loved Jake, but were surprised when he started making obscene suggestions to the female staff members. When he tried to physically grab one of the aides, the director knew he had to mention this issue to Jake’s family.
Jakes’s wife seemed to deflate when she heard about his actions and the things he was saying to the ladies, but she admitted that she wasn’t surprised. She reported that Jake had been swearing at home, something he never did before.
She started to cry in the director’s office.
Douglas was a stern and cold father who never expressed his feelings for his children or their families. In spite of a distant relationship, Douglas’ son, Scott, was determined to care for him in his home.
As Douglas’ dementia progressed, he reached a place where he was able to tell his son how much he loved and appreciated him. Soon after, Douglas became much less verbal and Scott didn’t hear “I love you” from his father any more.
Scott had many emotions about his Dad’s revelation.
He couldn’t help but feel skeptical: was it really true? Why hadn’t his father ever said this before?
He felt angry, too; why had this window of connection been so small? The anger covered Scott’s grief, for the loving relationship he’d never had, enjoyed for a moment, then had lost again.
A part of Scott was grateful, feeling that it was better to have received this precious gift from his father, even for a short time, than to never have had it at all.
Scott was glad he’d made the choice to care for his Dad at his home, realizing that if he’d been living elsewhere, he might never have received this message of love.
The same process was at work for both Jake and Douglas. “Disinhibition” is the term for what happens when the brain loses the ability to inhibit, or stop, our impulses to speak or act. We all have healthy inhibition, the “filter” that tells us not to say out loud the things that come to our mind. Think of the last time you were really angry, or jealous, or upset with someone, but you chose to “bite your tongue.”
Much of our inhibition is learned from our families and the world around us, and becomes automatic.
We are potty-trained so we won’t defecate or urinate in public. We learn not to use profane language, at least in certain settings. We may want to grab that piece of cake, good-looking person, or cash from the register, but we don’t. Our inhibitions protect us from behavior that could get us into trouble with the people around us.
Sometimes, our inhibitions keep us from expressing our love to our families, hold us back when others are dancing, or make us feel too shy to try something new and potentially risky or embarrassing.
Inhibition can be a double-edged sword for all of us. Good mental health has been described as “being open when we should be open, and closing when we should be closed.” Where and when that happens is subjective, and it can be tricky to know what to do in any given situation!
In dementia, inhibitions can be eroded by the disease process. It can make people swear or offer lewd suggestions. It can also make us laugh, sing, dance, and declare our love.
How we respond to these changes in the person who is living with cognitive challenges can make a difference in quality of life for them, and for ourselves.
We must pay attention to our own reactions, and process what we’re experiencing with our loved one and learning about ourselves, as Scott had to. Can we also exercise forgiveness for words and actions that are unseemly? We all have these impulses, but are usually blessed with strong “brakes” that keep us from acting on them.
How have you seen disinhibition in people who live with dementia, and how have you handled it? Please offer your comments in the space below; your sharing could be very helpful for someone who is new to caring for a person with dementia.