Bring me a sane caregiver and I will cure him/her for you - to paraphrase Carl Jung. The Greeks viewed madness as a gift from the gods - the divine release of the soul from the yoke of convention. The voices in my head my not be real but they have some good ideas. Caregiving challenges every belief you have about life and yourself. It is that kind of boundary experience where one life ends and another begins - where every map about how things should be gets us more lost. It's been said it's another country. We think we know what that means; we know our life will change but we have no clue. It shows that until you experience something it's all hearsay. My caregiver group knows on a visceral level the helplessness we feel coping with this horrible disease where our loved one dies twice. There's actually a diagnosis - caregiver syndrome.
Although each relationship has different issues - parent-child reversals push one set of buttons, a wife caring for a previously dominant husband pushes another. There's a universality to the ways we deal with our pain. There are actually two modes of the heart - struggle or surrender to what is. Surrender is not giving up but rather letting go. A common denominator in all emotional pain is the need to change current reality. Our only is choice is meaning management - what story can we tell ourselves to ease the burden - so as not to ..."come back from hell empty handed?"
Alzheimer's constantly reminds us that this moment is the only time any of us have and we want to make the most of it. The practice of mindfulness - an awareness of the present moment without judgment releases us from the neurotic pain we add to the real existence pain of life. Culturally, this is difficult for me. The Jewish joke of the year was "two Jewish women were sitting quietly together minding their own business."
Paradoxically, the exhaustion and the grief that is the constant companion of the caregiver as more and more of the person is lost, is often transcended by those moments of grace when we feel blessed to be able to give to this stranger who loved us once - we have a sense of purpose. Caregiver's live the most important lesson "meaning is all we need and relationship is all we have."
As the poet Tagore expressed:
I slept and dreamt that life was joy
I awoke and saw that life was service
I acted and behold, service was joy.
*And for those meltdowns when meaning and purpose don't help - forgive yourself, over, and over, and over and over again.