Failing In Place

New arrivals to our caregiver support group confirm what’s being reported in the medical literature. Dementia in the land of aging parents has reached a tipping point and now become the overwhelming concern of 80-90% of our attendees.

The vast majority of these caregivers are daughters of families fraught with denial, escalating conflict and sibling sabotage. Struggling to honor an aging parent’s wish to remain in their own home, these women find themselves caught up in a drama that is unraveling on all fronts, an experience they describe as “failing in place.”

Initially, they focus their efforts on shoring up their aging parent’s home with outside help or, if that proves untenable, opting to having them come live with them. Either way, the drama intensifies as darker aspects of dementia defy their best efforts to keep everything together. At some point they admit “I can’t go on like this,” and are left with planning what up to now has been unthinkable, placement in a dementia care facility.

But how? Our group offers cautionary tales from those who have orchestrated “the move.” While a small minority were blessed with a relatively uneventful placement experience, most found themselves caught up in the crossfire of familial fireworks as D-day approached. They warn that the involuntary transition to dementia care can be a heavy handed process filled with setbacks, betrayal, cajoling, manipulation, and deep regrets. In the end, you trade the trauma of the move to buy some emotional breathing room. Sadly, it proves short-lived.

You soon discover that placement comes with its own soundtrack, the song of the disoriented that keep asking, “When can I go home?” Adding insult to injury, caregivers are initially advised to stand down for a period of time at the beginning of the placement to allow space of for the new arrival to adjust. All this feels like more betrayal despite the unquestionable need for safer quarters. Those who have walked the dementia journey call this phase “fade to sadness.”

Dementia has its own dismissive dance, uneven days are followed by diminished continuity, thoughts and words just here are just as quickly gone. Conversations morph into one-side monologues and even old scrapbooks fail to recall memories that use to light up the past. Finally it becomes a shadow and then finally gone.

Our caregiver support group has lived it all and therein lies its redemptive power to shore up and nurture new arrivals on the dementia journey that can’t imagine how any of this will ever work out. Ultimately, the group is in the lending business, offering courage and hope at discount rates to those who, against formidable odds, are leaning in to go where they have to go…