Being a caregiver requires a fairly high degree of selflessness. I don’t mean you have to be a saint, god knows I’m not, but you do have to recognize that your needs might not always have top priority and that you’re the only one who has the ability to consciously change your behavior. As the disease progresses, the person with dementia can’t know what needs to change, much less make a deliberate decision to behave differently.
For example, I was raised to be on time. My mom thought being chronically late was a sign of poor planning and disrespect. Deena was always considerate about my need for punctuality, making an effort to be ready to leave on time, even when it wasn’t her natural inclination. “It’s ok, we’ll only be 15 minutes late.”
But, as her disease progressed and the concept of time slipped further away, my desire for being on time ran headlong into her inability to respond to any schedule. Initially I tried starting earlier, showering the evening before rather than cram in a shower before an early morning appointment, scheduling things later in the day. I’d encourage her to move along, get dressed and out the door on time. But the more I encouraged (she probably would say nag), the more behind schedule we’d get.
I finally realized that something had to give, and I was the only one with the ability to do the giving. So, with apologies to my mom, I let go of my need to be on time. It became clear that getting somewhere on time came at too high of a price for Deena, who often left the house for something that was supposed to ‘fun’, frustrated and anxious from feeling ‘rushed’. I put our friends on notice that they could expect us to be fashionably late for all future social engagements.
You often hear that the caregiver needs to ‘recalibrate’ their thoughts and actions as the dementia progresses. What used to work, might not any longer. And pretending that the need to change doesn’t exist is an exercise in futility. Once you understand that embracing the ability to change is pivotal to surviving your role as a caregiver, then everyone’s life will be easier.