This time of year may be centered on love and light, but for people caring for a loved one with dementia, the holidays can be brutal. Experiences built on traditions and memories create stress and pain for caregivers who may feel their personal history is being erased along with their parent's or spouse's cognition. It's like the proverbial tree falling in the woods. If the person who created the holiday memory for the family no longer remembers it, did it happen?
My grandmother used to tell me and my brother that even though it appeared our grandfather no longer knew us, deep down inside, he did. His disease was just preventing him from communicating with us the way he used to. I choose to hold true to this concept and I've built on it a bit.
We know our person with dementia can access memories at times - it may take longer - and we know that feelings never go away, even when details are lost. There is plenty of science to help us understand much of what is happening in the brain, but what about the spirit? The soul? The true self that many of us believe exists beyond death? If the soul lives on, doesn't it make sense that the soul remembers even when cognition is blocked by illness?
There's a lyric from U2's song "One," that I've always loved. "We're one, but we're not the same, we get to carry each other." Might carrying the memories we share with our loved one be another way to serve them and therefore, ourselves? Could it be another way to soothe their soul? The soul that may be aware and having an experience with us beyond our understanding? A complete and healthy soul simply tethered to an unwell body? A soul that basks in the love we bring when we carry and share memories when they cannot? It's so hard, in fact, it sucks. But if we choose to believe it is not one-sided, it just appears to be, maybe we can tap into the hope we desperately need when facing dementia.
Dear caregiver, I know your experience is excruciating, especially at the holidays. Hang in there. You really aren't carrying those warm and lovely memories you share with your loved one all by yourself. It just feels like that. Faith in the unseen is the belief that we can have confidence in what we hope for and assurance in what we cannot see. (Hebrews 11:1) You are in my heart this holiday season and I'm hoping for the best possible experiences for you and your loved one with dementia.
Just a few helpful resources for caregivers:
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