The Fool's Journey With Dementia

Fear Not.
What is not real, never was
and never will be.
What is real, always was
and cannot be destroyed.
-- Bhagavad Gita

Some mornings I'll pick up one of my tarot card decks, ask it to remind me what I need to remember that day, and choose a card. Each time I've done this, a nugget or two of juicy information I probably would not have thought of on my own surfaces to guide not only that day, but the others that follow.

Today's card is The Fool. The photo at the right shows The Fool card from the Rider-Waite tarot deck. Although there are hundreds of tarot decks (if not thousands), the R-W is commonly used to depict the symbolism of the tarot. Many decks are based on the symbolism in the R-W.

But this isn't a blog about tarot, so I'll cut to the chase and tell you what The Fool told me. It relates, of course, to living with Romeo's dementia. I give much of my time to Romeo. I do it because it's required of me, because I want to, because I enjoy being with Romeo, because I want him to be as content and comfortable as possible, because what we have together goes beyond common romantic love, beyond a typical husband/wife relationship.

This journey with dementia that we're in the thick of is the major theme in both of our lives currently. It is quite likely our lives will go on this way for some time yet. Whether or not it does, the longer and further we travel the road, beyond the gates of the city, beyond what is generally considered a life of normalcy, the more Romeo and I must fly by the seat of our pants.

The Fool, you see, represents the both of us, Romeo and Juliet -- not just Juliet, not just Romeo -- but the two of us, each as separate Fools, as well as the two of us combined into one Fool. The Fool reminds us that this dementia trip is no ordinary journey. We are called on to live in a place where anticipation is the norm, where not knowing what will happen next or when it will happen is standard operating procedure. We are called to invoke our courage, to live in a place without fear, to live this wonder tale with joy and gratitude.

As Romeo's dementia progresses, we travel with everything we need already in our possession: courage, love, ecstasy, wonder, intuitive guidance, creativity, innocence, trust. The progression of Romeo's dementia, the fact that I can no longer care for him at home, calls him to draw on each of these characteristics constantly (if he can remember) as he goes about his day. Having dementia is difficult for him.

Romeo's dementia likewise demands that I, as Romeo's caregiver and advocate, continually come from the essence of who I am to stand up for Romeo each moment of every day since he cannot, to love him for who he is (for he is not his dementia), to live our lives together, and to live my own life as well, separate from Romeo. To live with wonder, with ecstasy, without guilt.

It also demands that I ride the waves of creative energies coming my way on the crest of this wonder and ecstasy, that I transform it and transcend it, that I travel without looking where I'm stepping, trusting that a little nip at my heels will be enough to warn me of any impending danger in time to act. And to do it all alone.

As serious as it is to live with dementia, to be a caregiver for someone with dementia, there is much living to be done within it. Romeo and I are on an accelerated journey to...somewhere.