Dementia is a Time Warp
It’s been about a year since I’ve written about my caregiving journey, yet that’s not a problem in the least. Dementia repeatedly reminds me that time is flexible and fluid. It cannot be counted, measured, or controlled. For example, for me, winter remains the coldest, darkest time of the year, however the deeper dementia takes hold in my mother, the less that the specific season matters. What matters is only the now. For my mother, if it’s cold or dark, it could be winter or it could be night. Or it could be a grouchy unseasonably cold day at any other time of the year. The specifics, the language used, becomes less and less relevant. What matters is the feeling and the emotion. Dementia places us both in a time warp.
A time warp is defined as an “anomaly’ or “suspension or shift in the progress of time.” This describes our dementia journey perfectly. When I’m with her, all my knowledge and expertise around time, how best to manage and manipulate it, and the importance I seem to give it, falls away. Tracking time and using a calendar became unnecessary for her about a year ago. The week-at-a-glance calendar she relied upon in the past sat empty, and paper clippings from the week’s newspaper covered the top of it. She reminds me that what matters is only the now.
Doctors’ visits and other appointments are a great example. Waiting for the provider can be either irritating or pleasurable, in her mind. Her internal clock knows that we’re waiting. It knows that something is expected, yet it doesn’t measure the minutes or hours like mine. Ten minutes can seem like three hours, and three hours can feel either eternal or the blink of an eye. I do my best to predict either experience and engage her in a variety of activities during the wait. We share old stories, she’ll catch up on celebrity gossip, we make subtle jokes about where we are and how odd it all seems, or we look at photos of family members on my phone. We laugh. She reminds me that what matters is only the now.
More and more frequently over the last year, she’s asked me about her parents. She’ll say something like, “I really miss my mom and dad. But…I guess they’re dead now. Are my mom and dad dead?” It’s heart wrenching. We’re in a time warp, and they could be alive or not. Again, what matters is the feeling and the emotion. She’s missing them, and she’s sad. I do my best to acknowledge her emotional reality, not the time reality. The time-specific fact that her dad passed 20 years ago and her mother about 40 years ago is irrelevant. Sadness, on the hand, can be felt at any moment. She reminds me that what matters is what she’s feeling now.
About six months ago, my mother stopped using the phone. In the months prior, she’d had a cell phone, rather than a landline, in her assisted living apartment. I’d stripped all the apps off of the phone except the “phone” app and the “contacts” app. It made it much simpler than having to navigate a cluttered screen of symbols that meant little to her. She’d answer the phone and chat when it rang. Then, like many other objects of perceived value, she began hiding the phone. Without a charge, it would die. I’d find it, charge it, then the cycle would repeat.
My brother and I then installed a landline with a mobile handset for her. Perhaps we could’ve predicted that she’d hide the handset too, but we didn’t. After about a month, I casually asked if she wanted to use the phone anymore. She told me in a frank and loving way that no, she didn’t. Using it caused her frustration. She didn’t know what button to push when it rang, and this made her anxious. Her words were a blessing, and it was easier for us all to decide that using the phone was no longer something she enjoyed. She reminded me that what matters is here, right in front of her, right now.
The lesson that she (and dementia) teaches me again and again, is that the future is simply a guess. It’s a dream, a wish, yet at the core of our being, we know that it isn’t guaranteed. Being in a time warp is much more fun. It’s the realm of no rules. There’s laughter. It’s quite simple and easy, if we want it to be. There’s little to ground you except emotion and what’s happening at this moment. The past can surface. You can change it if you want to remember things differently. I can be her daughter or her sister. All that matters is that she loves me, and she can feel that I love her too.
PS: I wanted to add, that when I went back to check, it’s actually been 2 years since I’ve written about caregiving. I’m telling you…we’re all in a time warp. You just might not know it.💜
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