Dementia Dilemma: Dead People
Updated: Dec 9, 2020
Death is everyone's greatest dilemma. We spend our money, time, and energy trying to cheat it. This diet, this exercise, this abstinence, this cure, this belief system - these are all strategies for staving off what is the ultimate unknown for us.
Now, pretend 95% of your existence is already a big fat unknown to you, then throw a pinch of a loved one's death into the mix...
Having fun yet?
A few mornings ago, as I focused on the difficult task of getting Mom to brush her teeth she asked me "Where is he?" As this is not an uncommon question during the days when it's just she and I in the house, I absentmindedly reeled off the list of usual suspects who often comprise the "he" that Mom is missing. But this time was different - with every subsequent name I mentioned Mom became more frantic in her head shaking.
When I finally looked into her face, I could see eyes filling with tears. I hesitated, then said softly, "Are you talking about your husband? Are you talking about Gary?" She nodded, sorrow clouding her countenance.
I searched her face for signs as to what I should say next. Two answers fought for dominance over my tongue, jabbing and stabbing each other to be the first one out of my pursed lips.
I decided to release Answer #1: The Easiest Way Out. "He couldn't be here today, Mom. He had to go away, but he's waiting for you. He'll be happy to see you, all of us, when... it's time to join him." I like this answer, and use variations of it often. It's not a lie - it's a "fiblet" - a term I learned in the care giving community for "not exactly the truth." It usually satisfies Mom.
But not this time.
"Why?" she whispered, her voice filled with sadness, disbelief that he would leave her behind. I intently studied her, looking for clues as to which words should come next, a flood of previous memories with this dilemma flashing through my synapses at lightening speed.
My father died at home with his immediate family in attendance. He was not conscious his last 24-hours, his body fighting the shut down in big gasps of breath. So, The Other Girl and I, along with Dad's Ridiculously Tall Grandsons and The Boyfriend in the Basement, took turns sitting with him - it was too difficult for Mom. She stayed upstairs, alternating between confused terror and oblivion to the drama in the basement. After Dad passed, The Other Girl brought Mom down, explained that he had died, and held her hand as Mom gently caressed the forehead of her commander-in-chief. In the weeks that followed Mom seesawed between the knowledge of the loss of her 60+ years partner, and complete ignorance.
In the early months she would occasionally ask for Dad, but we soon came to realize the "Where is he?" question more often then not meant my sister, or me, or whomever had just walked out of the room 2 minutes ago. So, the response "He's dead" when she was only really asking about The Other Girl would bring down a world of hurt for the remainder of the day for no good reason. Thus, the fiblet became our fallback - it was the truth if she wasn't talking about Dad, and only a slight deception if she was.
But seeing her naked need for a different response this time, I decided to take my chances and unleash Answer #2: The Nuclear Option.
I sat her down on the toilet, settled on the floor in front of her, took a deep breath and said, "Your husband, Mom, my dad, he died." Tears rolled down both our cheeks as I held her hands, "He didn't want to go. He fought so hard to stay with you, but the cancer tore through him, and... he died." I reassured her that Dad was waiting for her, that he checks in on us periodically, and he's beyond proud of his girl who conquers each day regardless of the challenges (that last "conquers" bit being a touch of a fiblet - some days we hit the finish line battered and bloody, the conquered, not the conquerers).
We hugged. I told her I missed him too, especially his big laugh; she smiled at that. Then we got her in the shower which gave way to all new things to wail about; the grief of Dad washed away by the untold horrors of an ordinary washcloth.
The forums and FB pages I frequent often have care giver inquiries about how to deal with the dementia dilemma of dead people, and a myriad of responses from care givers who have already been through it which usually boils down to: It depends.
It depends on how progressed the disease is for your dementia person. It depends on how recent the loss. It depends on how they've reacted to your answers prior - did telling them the truth result in an all-day melt-down? Okay then, be wary of doing that again!
I always try to gauge where Mom is at when I'm in this situation - does she look like she needs to grieve at this moment? She is, after all, still an adult with adult emotions to process. Is it time to take one on the chin and give her space for sorrow right now? Or would her peace of mind be better served with a fiblet? Dementia dilemmas always have us care givers walking a fine line, assessing what our dementia person can handle at that moment in time, while respecting the adults that they are; grown men and women who can often still derive benefit from finding their own way through life's triumphs and trials.
My take-way from this dementia dilemma round? Well, the next time I see this question posted on a forum I can now add my own two cents: If you gotta tell your dementia person the truth about dead people, have a shower handy just in case: nothing seems to dry up sorrow quite like a soapy storm of rage.