“I’d never done anything like this before,” says Tricia DeRussy, recounting her early days as my wife’s caregiver. She started in the summer of 2001, almost four years after Martha was diagnosed with Alzheimer’s.
Tricia’s previous experience was as a nanny. “You told me that should be sufficient.” We had a good laugh over that. “But it turned out great,” she says. Actually, knowing how to work with children was pretty good training for working and playing with Martha, or anyone struggling with Alzheimer’s.
Until then, Martha had been fairly independent, but things were quickly changing and I needed to find someone to be with her while I was at work. Not long before, I was forced to take Martha’s car keys away. And then there was that scare when Martha walked out of her art class without telling anyone good-bye. (Fortunately, she somehow showed up at my office five blocks away and eight floors up just as I was scurrying to the elevator.)
Gregarious her whole life, Martha no longer was mixing easily with strangers, so the transition to Tricia took some thought. Our sister-in-law KK and I decided that she would walk in with her “good friend Tricia” for the first few mornings. This is the same KK who encouraged Martha with her painting. “The three of us went to movies and lunch and did other things for a few days,” Tricia says, until Martha saw her as a “good friend” too.
To brief herself on what to expect with Alzheimer’s, Tricia says she read several caregiver websites. “But they were depressing.” As a consequence, Tricia relied on her wits and common sense while, as she says, “depending on the Lord and Holy Spirit to help guide me.”
Tricia soon learned how important touch was to Martha. “We held hands almost everywhere we went. There’s so much love communicated with hugging and holding hands.” (Psst…that sounds like good advice for anyone going through a serious crisis.)
As their first year progressed, Tricia says the two biggest problems were Martha’s pacing and stubbornness. When in the house, “Martha would pace and pace and pace. I was afraid she’d wear herself out.” Finally, Tricia hit on the idea of driving Martha around town with the radio on. “Martha settled right down.” (We used to do that with our young children when they wouldn’t stop crying. Worked like a charm.)
“One of the hardest things for me to learn,” Tricia says, is what’s called “living in the moment.”
She remembers their first time grocery shopping together. “Martha was getting into the swing of the store’s piped-in music. Suddenly she stopped, turned around and pointed at me. She wanted me to dance with her right there in the grocery aisle. I was so embarrassed. But I finally thought, Oh what the heck, and we started dancing.” They eventually did a lot of dancing in grocery store aisles, Tricia says. And to this day, she doesn’t know what the other shoppers were thinking, and she doesn’t care.
That reminds me of an idea I read about years later. A caregiver daughter had an affectionate mother, who would walk right up to perfect strangers and engage them in an unintelligible language. After suffering through the embarrassment of this one time too many, the daughter had an aha moment. She printed up small cards explaining her mother had Alzheimer’s, and on the flip side she thanked the persons for their patience and graciousness. She passed those cards out wherever her mother had a spontaneous encounter. I wish we’d thought of that.
One last thought from Tricia: “Don’t assume that someone with Alzheimer’s doesn’t understand what’s going on. I learned that pretty quickly with Martha.”
For example: I remember walking into the house after work, ready to relieve Tricia. “Hey, Martha and Tricia, what’s happening?” Martha was standing behind Tricia who was sitting on our couch watching Oprah. Martha looked at me, bent forward slightly, and put a finger to her lips for me to be quiet. What’s this? I wondered. Probably something random. As I came closer I saw Tricia crying. Oh my, Martha is protecting her.
Thank you, Tricia.
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