A reflection on caregiving and dementia, Part 1
My vibrant mom masked her dementia for as long as she could. She was cheery, had good phone skills, was charming and disarming. Social skills are often one of the last skills to go for the dementia patient. While mom was mainly pleasant in social settings, sometimes she was a barracuda.
For example, we went to the Madonna restaurant for hot fudge sundaes after a long, leisurely drive. Mom saw herself as a local and a long time patron of the Madonna, and also entitled to top, professional service. When her sundae came with soft serve ice cream melted to liquid, an overabundance of fudge, and no actual icy lump of real ice cream, mom had a meltdown. She verbally reduced the server to an incompetent and perhaps ice-cream malicious miscreant. When the server looked for the manager, I left cash on the table, redirected mom downstairs to the see something in the opulent Ladies Room, then went out a separate exit. I had to whisk the dementia bandit to safety before both of us were arrested!
Mom was livid that such a fine place could serve such trash food – after all, mom “ran a restaurant.” The truth is, she was a waitress in her early days, and a fine one, but dementia altered the memory and the emotion invested in the memory. Her go-to position was righteous indignation. (I can see her arms folded and her right foot stomping.)
One of the hardest parts of being a dementia caretaker is to accept the person’s altered reality without insisting on being right. There was no point in saying, “Mom, you never owned a restaurant.” It was better to sympathize with the injustice of being unable to find a decent sundae after a fine summer day. After all, she wouldn’t remember the incident in another hour.
The caregiver has to accept, like the Serenity Prayer, the things that cannot be changed, while also accepting the changed reality inside the head of the loved one.
Mom also liked to bad mouth people. It was a sport. Whomever wasn’t there was fair game. While with me, she talked of my brother. While with my brother, she talked about me. While with a friend, she talked about us both and often in extreme terms. We were saints and sinners, never in the middle. My nickname was “Warden.” Another problem for the caretaker is separating myths from the beloved. One of mom’s favorite past times was telling people at the Senior Center that I beat her. It was hard to be graceful about that. (Sigh…)
The caretaker becomes prescription manager, dietitian, entertainer, organizer, chauffeur, chief medical officer, chief triage nurse, while trying to remain patient and kind. This is complicated by a medical condition that can make the loveliest person mean, or the most independent person dependent. It’s hard to watch.
It’s especially hard to watch the effects of dementia while mourning the loss. On the one hand, watching the person lose ability is baffling. “She could work her phone this morning, now she has every cord in her room unplugged and she is trying to get charge her phone with a speaker cord.” I was tech support for mom. I plugged stuff in, got it working, wrote down passwords, and did it all over again every time she removed and hid all the cords. It was maddening. I often felt frustrated that I had just fixed A or B and now all the cords are missing again! UGH! It’s like getting angry at a baby for being hungry. Anger and frustration didn’t help, but there it was.
In my mind, I compared dementia to reasoning with a drunk friend who did something regrettable. You can’t argue with a person while drunk, you can only redirect her toward drinking some water and going to bed. You have to tell her you love her and reassure her that everything is ok. Her filter is under the influence. Getting mad or winning an argument with a drunk person or a dementia parent is useless and embarrassing.
My mom, was still “my mom” up until her last breath, but dementia damaged her independence, her executive function, her nervous and muscle system, and increased her anxiety, fear and rash behaviors. I wonder if her head was shaved and wrapped in a silk scarf and she wore a big scar on her head, if it would have been easier to filter all interactions with her more appropriately.
I realize, only after she is gone, that more kindness and levity would have helped the situation more than a serious, dutiful and logic-seeking demeanor. I realize, only after it has been a few months, that at the time, it seemed that it was an endless roller coaster of frustration, but really there was an end, and it took my mom with it.