The fourth chapter of my teaching memoir is titled “He’s Not Giving You a Hard Time; He’s Having a Hard Time.” This is a caregiving principle that is meant to steer one toward looking at a situation from the point of view of the one affected by Alzheimer’s disease or another dementia. I have written a blog post about this previously.
In the book, I tell a story to illustrate this point–a long, complicated story that involves many characters. It’s actually funny from this side of its history, but it was frustratingly difficult at the time. And I knew that the three main characters living with dementia did not set out to upturn my life at that moment. They were each making decisions based on their perceptions of reality and their true emotional states. But it still made my life, and my brother-in-law’s life, extremely disruptive. I leave it to you to read the story!
At the end of each chapter of my book, I offer a handful of practices that the reader might choose to undertake to further explore that chapter’s caregiving principle. One of the practices at the conclusion of this chapter is as follows:
Sitting in your loved one’s favorite chair, close your eyes and imagine a twenty-four-hour period from his or her perspective.
You might choose to write down your observations, or perhaps single words that describe the emotions that you imagined your loved one feeling. The following are mine, imagining my husband’s state of mind in the early and middle stage of Alzheimer’s disease. (For an explanation of the multiple staging systems, see this webinar
Depression. Being by himself all day, it’s easy for me to imagine Harvey, especially early in the disease, ruminating about his losses. “Who am I now if I cannot work? There are so many things I can no longer do–read, run in the neighborhood, visit my parents, mow the grass. What purpose does my life even have now? How long can I manage on my own? How long will I live with this disease? How are Renée and the girls coping with my disease? I am putting them through so much!” He wasn’t purposefully making my life more difficult by not wanting to talk about it later in the evening, even though it frustrated me.
Boredom. Harvey was alone all day while I was at work and our daughters were at school. In the middle stage of his disease, he was at a loss for how to fill his days. I would come home to find random objects filling a grocery bag or cardboard box. I might find that the filing cabinet had been emptied of its contents, with important papers scattered around the house, marked up with circling and underlining. Coming home to this scenario certainly made my life harder, but it wasn’t because Harvey was trying to make it so. He was just bored!
Anxiety. I can imagine that being alone all day, trying to fill his time, Harvey probably also had a degree of anxiety. “When is Renée getting home? Is she alright? What if I am here alone forever?” When I got home from work, he would often greet me at the door, as if he had been waiting there all day, and with relief in his voice, say, “Oh, thank goodness you’re home!”
Once you have done this exercise, you will have a better idea of how you might make your loved one’s life easier, and therefore, your own. Once I realized that Harvey was bored and anxious, I would leave small projects for him to complete, and eventually I moved to get professional caregivers into the house and enrolled him in a respite care program. If you are home with your loved one, your options may be different, but might include caregivers or friends coming over or searching for purposeful activities that you can do together. Maintaining a daily schedule can help, too.