One of the things I love about working in dementia care is that we never know what we are going to get. People are constantly surprising you. The way words are put together in never-before-heard combinations, the insight that take your breath away, the intensity of feeling and the unexpectedly humorous moments. The days in which I get to interact with people with dementia have always contained an element of surprise, often in a delightful way.
I recall one time when my mother, who lived with dementia for over a decade, was in the hospital. I visited her shortly after her admittance. She was delirious, perhaps from medication, perhaps as a result of the dramatic change in her surroundings or maybe she was severely dehydrated, who knows? When I walked in, she was singing one of her favorite songs, “Let me call you Sweetheart” in the loudest, angriest voice I had ever heard come out of her mouth. It was absurdly delightful on one level but deeply disturbing all at once. Mom was not typically loud in her anger. Now, her voice sounded like she was grabbing desperately to a much-needed thread, terrified of losing her grip. I was flustered, a bit embarrassed, and unsure what to do. These many decades later I don’t recall exactly how I reacted, but I’m fairly certain that I tried (unsuccessfully) to get her to quiet down, and having failed, went to find help.
I do remember that she was just fine the next time I visited. At least, there was no more delirium.
I love that she was singing a song that she loved in that moment of fear. If I were to do the moment over, I’d be tempted to try singing along with her, just to see if that would have any positive effect. Then again, I might have been booted out of the unit and it may have caused her more agitation! Delirium is no doubt best handled by experts in delirium, which I am not!
In MOST situations with persons with dementia, joining the person somehow in their feeling, validating rather than trying to correct or convince, responding rather than reacting, being kind rather than adamant, understanding rather than argumentative and overall projecting a steady, calm, caring demeanor even when you feel exhausted and exasperated or without a clue is probably a good plan…as is remembering to connect first before any task.
I visited one of my favorite residents, Agnes, a few weeks after she moved out of the Memory Care community where I was Activities Coordinator. Agnes was actually the first resident who moved in when our community was brand new. She was unforgettable. Short, independent, stubborn and prickly, she was fond of saying exactly what she thought, including, (repeatedly) to our Campus Administrator, “Well, look who you run into when you don’t have a shotgun!” Agnes was hilarious, with an edge. When she finally had to move to the skilled nursing environment, she was 101. Her dementia was progressing. By then she qualified as an institution at our Assisted Living, so of course I had to go check in with her.
She was glad to see me and was still quite sharp and chatty. During our visit, a nurse interrupted us (rather brusquely) and attempted to give Agnes a pill. Agnes started to scream, loudly, ‘NOOOOOOOOOOOOOOOOOOOOOOO!!!!” I had never heard Agnes scream, ever! The nurse tried harder to get the medicine into Agnes’ mouth. You can probably guess how well that went over. Agnes screamed even louder. The nurse slunk away in defeat. Agnes looked at me with a smile, eyes shining brightly and calmly said, “You can’t let ‘em win EVERY time!” I laughed out loud. I was so proud of her! I knew she was going to be all right!
You especially “can’t let ‘em win” if you are approached in a forceful, bossy, “my way or the highway” way by a care provider who fails to connect with you first before a task!
One more surprise story. A woman named Betty, of whom I was very fond, was moody and unhappy. She had been an accomplished artist. Now, she was heartbroken that she could no longer paint as she used to. We gave her multiple opportunities, but her standards were high. She was frustrated and disgusted by her inability to connect her brain and her paintbrush to paint and paper in the manner to which she was accustomed. After a while, her husband decided she might thrive better in a smaller assisted living community. He decided not to tell her in advance about the move, which is often a smart way to go. On the day of the move, early in the morning, Betty came into my office to chat, as she often did. She stood by the door the entire time. Betty was often wistful, but today she seemed particularly so. Before she left my little office, she looked me square in the face and said, ‘Have a nice life.” With an artist’s sensitivity, she had sensed the changing tide, I believe, although no one had told her directly of the impending move.
Ebenezer Dimensions Program Coordinator
September 21, 2021