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Navigating Obsessing, Fear & Memory in Dementia

While my uncle was out of town recently, I agreed to stay with my grandmother and take care of her for a week so her routine wouldn’t be disrupted. I’ve only been around her for a couple days at a time over the last few years, so I wasn’t sure how to prepare myself for an entire week knowing the state of her dementia. I took a deep breath, packed my patience and her old favorite card game, and off I went.

Obsessing

I was prepared to tell her multiple times a day, “Yes, we already stopped at the store and picked up bread and milk.” Or “We cashed your check yesterday, remember?” Or even the most popular, “Yes, you took your pills at lunch time.” I’ve grown accustomed to her short term memory loss and have accepted the repetitiveness of every conversation. What I wasn’t prepared for was her nightly routine of obsessing over whether or not she took her pills. I would say goodnight and within 10 minutes she would be up with a flashlight in the kitchen to check her pillbox for that day. This would go on about every 10 minutes for up to an hour most nights. Sometimes she would come ask if she took her pills or verify what day it was. Saddened by the fact that she couldn’t get her mind to shut down and go to sleep, I remembered an article I had read in Parade about helping dementia patients remember by having a note for them to read. Since this situation was a tad different, I took it a step further to see if it would work.

Just before bed, I pulled out a piece of paper and a pen, handed them to her and then asked, “What is today?” She responded, “Thursday, I think. Right?” I confirmed the day and then instructed her to write down, “Today is Thursday.” Then I asked, “Did you take your pills today?” She hesitated, checked her Thursday pillbox and then confirmed she took them. I instructed her to write down, “I took my pills today.” Then I left the pill box on the table with the note she had written on top and told her I was leaving them both right here in case she didn’t remember she could read this note. She went to bed and I waited to see if it worked. My heart dropped when I saw her in the kitchen with the flashlight 15 minutes later and it sank even further when I saw her appear again 10 minutes after the first pill check. With my spirit broken, I started scavenging the internet for any tips or tricks I could find without much luck. Suddenly, I realized 45 minutes had passed and she hadn’t emerged from her bedroom since the second pill check. From 7-10 nightly pill checks to 2, is a great improvement. Maybe it had worked after all. I followed that routine every night for the remainder of my stay and was amazed to watch her read the note twice, check that day’s pillbox twice and off she would go to drift into a sleep, free from obsessing.

Fear

I had to run errands almost every day and she was always glad to come along. Sometimes she wanted to just stay in the car, afraid going in would require too much walking. Due to the heat, I wouldn’t let her sit and roast in the car. I had her walk into the store with me and then I would find a bench or chair so she could people watch while she waited. One day she mentioned her wrist watch wasn’t keeping the right time. After taking a look, it was clear the battery was dead. I mentioned to her that we should get the battery replaced or buy her a new watch. I was taken aback when she told me she would prefer to wait until my uncle returned from his trip to sort it out. Knowing the battery would be $5 or a new watch $15, I couldn’t comprehend why she didn’t want to go check it out. Money wasn’t the issue and she had already visited multiple stores with me. I pressed her and tried to convince her to go, but it only seemed to irritate her further. Why was she so resistant? What was she so afraid of? After all, she had pointed out her broken watch to me a couple times. Clearly it bothered her and it was something she wanted fixed. I left it alone.

I decided the following day I would take her without telling her where we were going. Hoping it wouldn’t make her mad, but realizing she may not remember our conversation from the day before, off we went. When she asked where we were going, I told her I needed something at the store. I walked her over to the jewelry section and asked for her watch. The battery was replaced in minutes and when I handed it back she was pleased and grateful. Maybe she didn’t remember the conversation from the day before or maybe she didn’t have time in that moment to contemplate her fear of doing something different. Regardless, I found a new way to help her conquer her fears and sometimes that means withholding information until the last minute so she doesn’t have the chance to create the fear in the first place.

Memory

After several days of playing Skip Bo, I was bored with the game and bored with reminding her of the rules. I rummaged through her games to find a new one to play. Low and behold there was the same deck of Uno cards we played with every afternoon in the summer when I was about 8 years old. Uno being a bit more complicated, I decided to lay out all the Wild Cards, Reverses, etc., on the table for her to reference visually as we played. I was expecting five games of continuous questions before having one smooth game. What happened in the first game blew me away. Throwing down Draw-Twos and Draw-Fours, changing the colors left and right with the card of the same number (not sure I even explained that was possible in my rule review session) and calling me out on my Uno as the second to last card left my hand. I sat with more cards then I could hold in my hand as she went out and won the game.

Game after game she continued to win and the competitor in me could care less. Tickled to pieces, I felt like I was 8 years old again, sitting on her back porch listening to her scoff when I intercepted her win with a color change and her cackle when she intercepted my win with a Draw- Four. She never once referenced the cards I had laid out. She never once asked me how many cards she needed to draw. She knew. She remembered. I ceased the moment. I started the conversation, “Do you remember when…” And what an afternoon of fun, laughter and memories I had with my 89 year old grandmother.

Sure there were a few aggravating moments that week as well as a few emotional ones, but it was certainly time well spent. I learned to walk a little slower, speak a little sweeter and to make the most of every minute we have together. She may not remember everything and she may not even remember some of the precious moments we shared that week, but I will. And that’s all that matters to me.

Carrie Robertson
Research & Community Education

Skilled Nursing for Dementia 
Chicago Senior Services

 

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