Despite having been exposed to dementia for so many years now, I still fail to comprehend how memory loss affects one’s ability to function. I mean I actually do understand but I still get surprised every single time. As a caretaker I have convinced myself and believe with full conviction that routine repetition enhances the memory and makes the memory loss manageable. Therefore, I believed that over time the loss of a spouse would somehow get downloaded into the dementia mind. Wrong.
Cognitive ability is one thing and emotional intelligence is another. Human emotions are so naturally woven into us that no memory is required to feel a certain way. It just happens. Love is one such feeling. When you love someone so deeply like a spouse, and you spend a lifetime together, there are some things which you just do without thinking. Loving gestures that make up a big part of your existence.
Think about what you do for your loved one? Simple gestures. Maybe you make sure the car is always filled with gas or is always clean so your spouse doesn’t have to do it. Maybe your meals are always prepared and ready to be served as soon as your spouse gets home. Maybe the temperature of your home is set to the ideal one that your spouse likes. The gesture doesn’t have to be grand. It just has to show that you notice the needs of your spouse and you care enough to ensure those needs are met.
When you have lived a lifetime with your spouse these gestures become second nature. You do them without thinking about them. They just get done because it’s habitual and it is the order of your home and your life.
Now enters dementia. Suddenly your cognitive abilities are compromised leaving you confused in most scenarios. It’s sad but it’s just the way it is. Your emotional intelligence however is still intact. What happens now is a clash between the mind and the emotions. The mind that usually supported the emotions now loses its connection. The death of a spouse cannot be remembered. It doesn’t matter that months have passed and the dementia mind has been reminded hundreds of times. The possibility of life without the spouse is not one that the dementia mind can accept. There is no memory of illness or deterioration of health so how can the spouse suddenly die? It’s total denial. Or so it seems to me as the silent observer. No matter how many ways the same 3-4 sentences regarding death are presented to the dementia mind, death is unacceptable.
What then does the dementia mind do? The emotional connection is very much alive. This means the loving gestures continue. So, every night a light is left open for when he comes home. The door is left unlocked for when he comes in the room. His clothes are laid out for when he needs to dress. And in the morning, the dementia mind remains oblivious to the fact that the clothes haven’t been worn and instead stays in bed waiting for him to get done with the bathroom and to dress before her. When the dementia mind finally does get dressed and comes out, breakfast is put on hold until he comes and joins her. And so begins another day of gentle reminders and coping strategies to get through the day.
This is very similar to what I’m seeing with my parents. And I can’t believe how lucky I am in some ways. my father who is 99 has no idea that he is dying, or that he is on repeat. But the lucky thing is that he’s a broken record of, a few of his classic jokes and clips and constant reminders to his wife of how pretty she is and how much he loves her. He does get angry sometimes, and upset. Usually, I think that happens when he is in pain. But mostly he cracks the same jokes over and over again and profess love to my mother.
Thank you for this beautiful insight—it's heartbreakingly perceptive. I'm standing alongside you as you go through this again and again. I hope you have support for yourself nearby. I'm here.