This is my manifesto for Dementia with Dignity. Dementia is a condition that progresses and not something to be fixed.
#1 “Let me off the hook.”
No, I can’t remember that. No, I don’t know who that is. No, I can’t figure out how to do this. Please stop being surprised when I can’t recall something or understand something. It’s to be expected. Dementia is the condition of losing memory and losing rational thought, so I will continue to remember less and continue to understand less. It hurts me when you go to such pains to show me that I’m failing.
And please, please stop trying to teach me things. I can’t learn new things anymore. I won’t ever get better at remembering, or reasoning, or following a list of instructions. Don’t test my memory. Testing improves memory in healthy brains, not those already experiencing dementia. I need you to partner with me, not correct or instruct me.
#2: “See me. I’m not gone yet.”
I am me. I’m still myself. I may be losing my memory and memories, but I still experience them. Please understand this: the part of me that experiences life is fully intact. Even if I don’t remember what we said and did this morning, it doesn’t mean I didn’t experience it with you. That experience is affecting my mood now. I was just as fully there as you were, maybe more so, and I am fully here in this moment, too.
#3: “Help me, don’t prevent me.”
We have two types of thought processes—and I’m only losing one. I’m losing rational thought but I am not losing intuitive thought. Please understand the difference. Rational thought is all about manipulating facts. It helps us tally facts, check off lists, see cause and effect, evaluate, compare, organize, and come to decisions. You’re right. I’m becoming less able to do those kinds of things. I need your help with those.
But I am not losing my intuitive thought processes. I can read your expression and body language very, very well. 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 see, hear, touch, feel touch, smell, and taste. Please help me explore all the beauty this world has to offer. I want to experience it with you. Don’t lock me away or isolate me in hopes of keeping me safe. I need beauty and companionship more than ever.
#4: “Show me the goods.”
When you bring to me sorrow, I have no defenses. I cannot reason you or myself out of it. I can only experience it with you. When you are irritated with me, I cannot use cause and effect to understand why, only reflect it back to you. When you are overcome with work or worry, I cannot form a plan to help you or lighten your load, like I used to. 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 what people spend decades using meditation 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, beside me. I feel everything so deeply, so clearly—without rational thought to distract, label, compare, and judge.
Come join me—even if only for a moment. I would be so happy to enjoy it with you.