I am the primary caregiver to my mother with dementia. I am the perpetual caretaker of all of the details. Her likes, her dislikes, her allergies, her dreams, her regrets. How’s that for a powerful pattern? From parent to child, the custodian of all of the small and large details of a life’s journey.
“There’s no definitive nature to the course of dementia, the disease is dynamic and each case is unique,” her geriatric psychiatrist reflected. He captured the essence of the emotional struggle I experienced over the years of her illness. I always looked for patterns in my mother’s disease; the patterns that I perceived, however, were simply illusions.
The doctor was right. Nothing was ever definitive.
“The other factor we must recognize is that patients don’t stay static through their disease: they age, they continue to decline. Success today doesn’t mean success tomorrow, and it’s no ones fault,” the doctor continued.
Ah, the concept of fault and the pain that’s left in its wake.
It took me a long time to reconcile that pain. It’s the pain that I saw in the eyes of so many support group participants. It’s the pain that comes from falling short in supporting one who had been responsible for a lifetime of your care. It’s the pain that comes from making decisions for someone who once was strong. Acting now in their presence but in the absence of their cognitive engagement.
Through her illness I watched my mother agonize to put into words her decline. I knew how busy the doctors and medical staffs were, I’d step in, I’d move the discussion along. She would nod as she tried to follow the conversation, but I saw the concession flash in her eyes, the knowledge that she was no longer in control. My intervention felt like overstepping – wrong on some basic level. There was only a modicum of relief when that recognition was no longer present in her eyes.
When the dementia took that from her, too.