See Me - Feel Me - Touch me - Heal Me

Can we please stop portraying persons living with Dementia as the living dead? They are not lost from us as so many articles and public Posts suggest. They are here. They are present in our lives. I’ve seen catch phrases such as “The Long Good Bye”, implying that from the time of diagnosis, there is nothing left to do but to say Good Bye. There’s a lot left to do, and a lot of life yet to be lived. Goodhearted people comment on Posts expressing sympathy that “they are a shell of their former self”, as if they’re a scooped out pumpkin…hollow shells. How do you think those living with Dementia feel when they understand that we see them as driftwood washed ashore? Yes, they do understand…more than we know. As the Episodic Memory filled with facts of Who, What, Where, and When may be impaired, their Emotional Visceral Memory remains. These are the memories of the senses. The memories Dementia cannot wash away. The memories that we all have that will find you no matter what. Those living with Dementia know who they are…they just may not be able to tell you. They know what they want and don’t want…we just never ask. Their needs are the same Human Needs we all share. Those needs go far beyond basic needs of food, clothing and shelter. As Human Beings we want to feel wanted, needed, secure, and that there is a purpose to our lives.

It is not my intention or wish to criticize the existing system of Dementia Care which we’ve established and accepted. A whole lot of hard working people with a whole lot of heart strive to provide the best life possible for Residents of their Memory Care Communities. To all of you, thank you truly from my heart, A lovely life without care or worry. Birds in the Aviary, Activity Calendars packed with activities that a trained and dedicated Programs Director has arranged, Beauty Shop and Bingo Parlor all in the same building (so you don’t have to out if it’s raining!). A lovely life, yes. The problem? This life isn’t their life.

What do they want? What would they like to do today? What would they like for dinner? We don’t ask. We assume that they’re not capable of making any decisions on their own behalf…so we decide for them. In their best interest? So we tell ourselves. From the first time we assumed the person forgot how to butter a roll and did it for them, we’ve taken from them. Did anyone ask if perhaps the person was saving the roll for last and had every intention of slathering on some butter, just as they’d done for all their life, or did we just rush in to do it for them, assuming they were not capable? We’ve become Helicopter Caregivers serving a false narrative which implies that without us performing every task for them all those with Dementia would starve, wander down a coal chute naked and die.

If we are accepting this false narrative that living with Dementia is “death while living”, as one misguided article proclaimed, then we are only focused on the deficits and not on the many skills and abilities which remain. There is a richness to the life which has been lived. If your loved one wants to talk about events which happened 20 years ago, take the time to listen. You may learn more about their life story than you have ever imagined. Every human being wants to feel that their life matters. That they have a sense of purpose. Surely there are some daily tasks that they would still like to perform, albeit at their own pace. What do they like to do to assist with activities of daily living? Can they assist with meal preparation? Tend the garden? Care for a beloved pet? We have got to allow them the dignity of at least trying to live their own life without swooping in to take control. Dementia hasn’t robbed them of their life. With the kindest of hearts and the best of intentions, we’ve done that.

Your loved one isn’t lost to Dementia…they’re still the same person waiting to be found.