When your loved one’s mind goes wandering, do you stand on the sidelines waving goodbye or do you pack a bag and go with them?
In the NY Times April 9, 2015, Modern Love column, A Boyfriend Too Good to Be True, the author, Deenie Hartzog-Mislock describes her family’s reaction to the “wild stories” told by her grandmother who was living with Alzheimer’s Disease. When grandma first started reciting a complex story about a mystery suitor, her family corrected her, trying to refocus her to “the present.” But grandma’s response to being told “I really think you’re imagining this. You’ve been watching too much television” was anger and distress. Recognizing that the cure was worse than the disease, the family changed its tactics. In her column, the author writes, “There comes a time when the caretakers and family of Alzheimer’s patients may be advised to adopt the patient’s reality as their own. This can help establish a sense of normalcy for the patient, diminish potential confusion and temper agitation.” But what the author’s family did not know at the time was that in embracing their loved one’s new reality, they were also freeing themselves of the need to cure or change her. The author writes that after a long period of resistance, “…each vignette became a source of amusement among us. We marveled at my grandmother’s mind, which was restricted by memory but freed by imagination.”
My Dad and Dementia
Before his death almost four years ago, my father too was afflicted with dementia; in his case it was Lewy Bodies that caused the hallucinations. My dad’s mind often took him down dark paths with accusations and unsubstantiated fears. But, like Hartzog-Mislock’s grandmother, dad also had episodes when he imagined scenes that gave him back the feeling of control that he lost as the disease progressed. But while some in our family may have felt threatened by his mind’s wanderings, my sister was not one of them. She told me about an incident that occurred one day when she found our dad sitting alone, in conversation, at the dining room table. As she walked in, dad announced, “I see we have another person joining the meeting.” My sister could have said “There’s no meeting dad. You’re sitting alone talking to yourself at the dining room table.” But intuitively my sister knew better and said, as she sat down, “Thanks for inviting me.” Dad then asked, “Why don’t you tell us what brought you to this meeting?” “I’m just here to learn,” said my sister. As she tells the story, dad then replied in his familiar magnanimous style, “Well, isn’t that what we’re really all here for – to learn.” My sister did not correct him or try to re-direct him to a reality that no longer worked for him. She loved him enough to let go of any need to control his thinking and instead, went along with him for the ride.
It’s natural to mourn the loss of a parent, friend, spouse or partner when dementia causes them to lose the ability to interact with us in our present reality. But as imagination takes the place of functional thought we can either feel locked out of their world or learn to accept and even participate in their new reality, thus bringing newness and value to a relationship that once felt lost.