What is it Like Experiencing Dementia?
This series of statements is a manifesto for my book, Dementia With Dignity. It explains what it is like experiencing dementia. It’s important that you keep in mind that dementia is a condition, not a disease—one that is progressive and that cannot currently be cured with medications. Take some time to consider each of the statements below and think about what a person is experiencing as their dementia progresses. Keep in mind that their actions and words reflect their feelings, not a diagnosis that they may have been given. And when a person is losing cognitive skills that they’ve relied upon all of their life, they will be upset and frustrated.
#1 “Let me off the hook.”
No, I can’t remember that. No, I don’t know who that person is. No, I cannot figure out how to do that. Please, for the benefit of my self-worth, stop being surprised when I cannot recall something or understand something. It is not rational to think that I will remember when I’m losing my memory skills. It’s even more nonsensical to think that I can understand your explanations when I’m losing my rational thinking skills. I will continue to remember less and continue to understand less. It hurts me when you repeatedly test me and show me that I’m failing.
And please, please stop trying to teach me things. I am losing the ability to learn new things. I won’t ever get better at remembering, or at reasoning, or at following a list of instructions. Don’t quiz me. I need you to partner with me, not correct and instruct me. I need you to accept my diminishing skills and help me cope.
“See me. I’m not gone yet.”
I am me. I’m still myself. I may be losing my memory and memories, but I am still experiencing life and am fully able to enjoy the present moment. Please understand that not being able to recall something or report it doesn’t mean the experience didn’t happen. Even if I don’t remember what we said and did this morning, it doesn’t mean I didn’t experience it with you, and that that experience will not affect my mood going forward—it will. I was just as fully there as you were—maybe more so—and I am fully here in this moment, too. But only you can make it beautiful for me.
#3: “Help me, don’t prevent me.”
We have two sets of thinking skills and I’m only losing the secondary set. I’m losing rational thought but I am not losing intuitive thought. Please understand the difference between the two. Rational thought is all about manipulating facts. It helps us organize information, check off lists, see cause and effect, evaluate, compare, and come to decisions. You’re right. I’m becoming less able to do those things. I need your help with those tasks.
But I am not losing my intuitive thought processes. My ability to read your expressions and body language is heightened and has actually improved. I know how you feel and I know how I feel, even if I can’t think of the right word to express it. I can enjoy beauty in all its forms. I can hear, see, touch, feel touch, taste and smell. Please help me explore all the beauty this world has to offer. I want to experience it with you. Don’t isolate me or lock me away in hopes of keeping me safe. I need beauty and companionship more than ever.
4: “Show me the good.”
I have no defenses when you bring me sorrow. I cannot recall or analyze why you might be sad, nor reason you or myself out of it. I can only experience what you bring me. When you are irritated with me, I cannot use cause and effect to understand why. I can only reflect it back to you. When you are overcome with worry, I cannot form a plan to help you or lighten your load like I used to (I wish that I could, but I cannot). All I can do is absorb your negativity and amplify it. I am like a sponge to your moods.
So please bring me the good things in life—your love, your laughter, your companionship. I will reflect it back to you twofold. That I can do.
5: “Join me in the intuitive world.”
It’s wonderful over here! You wouldn’t believe how much joy there can be! I am living in the present moment. I have mastered effortlessly (because I have no option) what people spend decades using mindfulness to achieve. I am here, in the now, fully, with no distractions from thoughts about the past or future. Come join me. You will find beauty in every direction too, if you’ll just slow down and look, really look, and be, here beside me. I feel everything so deeply, so clearly—now that I am without rational thought or memory to distract me.
Come join me—even if only for a minute or two. I would be so happy to enjoy it with you.