Here is a story that offers a different perspective, brought to my attention by a family who is struggling with a loved one’s dementia. I know you all can identify with the challenges of dealing with dementia’s disruptive behaviors, and how the stress of caregiving can make you think and say the darndest things.
Mom has dementia. She lives with her son’s family. She carries a baby doll around. His name is Pupito. I was called in to assess Mom’s cognitive status and offer helpful tips to the family for dealing with her difficult behaviors. Being the DQ that I am, and a believer in the productive and calming benefits of the nurturing instinct, I was totally fine with Pupito. I was actually glad to see that she had found her own coping mechanism for dealing with her confusion.
But the family was not ok with it… at all.
She preferred the company of Pupito to them, and to even her own grandchildren. She insisted that he go everywhere with them, even to church. She talked and fussed over him the entire time, disrupting the service and embarrassing everyone.
Still, I encouraged them to allow her that escape. I told them that caring for Pupito was a great way for her to feel productive and useful. She could work through her feelings of fear and anxiety by caring for a child, as she had done with her own children most of her adult life. It would keep her busy and engaged in a functional activity.
Mom loved Pupito. The family hated the Devil Doll.
Mom confabulated a tale around Pupito that made it difficult to redirect her, reorient her, or reason with her. She guarded him fiercely. Mom’s entire daily schedule and agenda revolved around the doll. She carried him with her everywhere she went, even when she was off balance or walking up and down stairs. She refused to put him down. She wouldn’t eat until Pupito ate, and whenever she tried to feed him, he wouldn’t swallow the food. So she’d jam more into his mouth. His eating difficulties panicked her. The family would try to help and she refused to let them. This led to catastrophic meltdowns and fits of rage. The family dreaded mealtimes and the inevitable chaos that ensued.
As time went on, she continued to increase her attention on the baby doll and neglect her own needs. Her agitation and anxiety escalated. She eventually formed a very detailed delusion about the doll’s safety, projecting paranoid and irrational fear about Pupito’s well being. She was sure someone was coming to kill him.
Mom stopped sleeping. She tucked Pupito into her bed at night and kept watch out the window while he slept. She would only nap briefly during the day, snapping to attention if someone entered the room or said hello.
I continued to encourage the family to accept the baby doll as part of the family. Get a crib. Change his diapers. Join her in her journey (kitschy I know). But maybe Mom could start to relax if she could be assured that everyone was looking out for him. Simple Validation 101.
But this didn’t really work. The family grew more and more exhausted and resentful. Mom’s baby-centric behavior continued to trump all other issues. Nobody slept at night. Nobody rested during the day. Family mealtime fell by the wayside. Self care was a battle. The only family member who was happy and well cared for was Pupito.
The family was stressed and torn. They were desperate to end the relationship between Mom and Pupito, as they viewed his existence as the root of all of their problems. Despite my logical counsel and sage advice, only one answer loomed darkly in their minds as a self-fulfilling prophecy: We must kill the Devil Doll.
This story doesn’t have a happy ending. There is no conflict resolution. It just goes on. The family did not kill the Devil Doll, but they’d still like to. Mom’s dementia did not improve. In fact it got worse. This story has a terrible, unsatisfying plot line.
But it does have a moral. The moral is this: dementia cannot be outwitted by logic. Also, it is unhelpful to beat caregivers over the head with platitude sticks. I don’t know why we apply bandaids to hemorrhages and build damns at the bottom of waterfalls. We do these things because we want desperately to rewrite these endings with classic white horse heroism. I guess that is why we keep trying.
As of 2013, there were an estimated 44.4 million people with dementia worldwide. This number will increase to an estimated 75.6 million in 2030, and 135.5 million in 2050. Much of the increase will be in developing countries.
Dementia statistics | Alzheimer’s Disease International