A friend’s mother passed away recently. I texted him condolences and told him I was sorry for his loss.
“We lost her long ago,” he replied. She had been in a memory care unit for five years and had lost the ability to recognise her children and grandchildren for two years.
For loved ones of the demented, the slow-motion departure of once-vibrant parents or spouses to the shroud of Parkinson’s or Alzheimer’s or stroke presents ongoing mental health challenges.
We first experience dread: a diagnosis is made, concerned phone calls amongst affected parties transpire. Then communication with your loved one begins to degrade: a few names and facts are forgotten. Some phrases and anecdotes are repeated over the course of a day. There is concern and there is interaction, in some cases even levity. I called my mother after her serious stroke to see how she was doing. “I’m sorry – do I know you?” was her joking response. But the decline continues until it becomes unarrestable, and it was only a few short years later that she would not have the capability to question why someone her son’s age was appearing in her room.
Then begins the time-release grief. The person you once knew has passed on, what’s left is only the physical shell. Her smile when you appear at the door to her memory care unit is eventually replaced with a look of confusion or no reaction at all.
You long for the miracle, for her to suddenly wake up and begin conversing. The glimmers of consciousness, like pinpricks through a blackout curtain, serve only to frustrate further. There is no hard and fast closure, just the lingering rot of empathy and frustration. They say that a demented person, in his or her dying moments, will sometimes regain full consciousness and converse with those around them with full clarity. If that’s true, why can’t they manufacture it? How miraculous it would be, if only for a brief while.
But these flashes of recognition and sparkles of consciousness are moments to be cherished. A question correctly answered, a memory recalled, relatives’ names remembered. These monuments of cognition need to be celebrated, however brief and fleeting they may be.
But after these instances pass, one is left with the final emotion – guilt. Why can’t I do more? If I were there all the time, would it help? Does she actually feel what’s going on, and if so, how can I help? There is the story of the king who asked his wise man to provide him with a phrase that is true under all circumstances. The wise man says, “This too shall pass.” The wise man has obviously never had a relative with dementia. Nothing will pass until the loved one does.
Maintaining the edifice of emotions around a loved one’s decline requires recognition and constant attention. Anti-fragile support networks – friends, siblings, family – play an outsized part in this process. Aligning with these networks is utterly essential, but significant and active efforts must be made to maintain cohesion during these difficult times.
We must remember – we are not the first. We are not the only ones. Many have gone before in dealing with this pain. Learning from their experiences and seeking appropriate counsel can make a world of difference in dealing with these matters.
