I found myself in a fury the other day after reading a post about dementia terms to avoid by a well-respected blogger. How dare she tell me what I could say! I asked myself from my high horse. But then I took a breath and dismounted.
When I read about the experiences of others involved with dementia I often find myself reacting with a range of emotions I am not exactly proud to feel.
Sometimes I am jealous, reading about people who have been diagnosed with dementia yet seem able to articulate their situation in ways I cannot imagine Ralph doing.
Sometimes I am defensive, especially when I read about caregivers who seem a lot more selfless in their willingness to put dedicate themselves 24/7 to the care of their loved one.
Sometimes I am angry, when I feel harangued to behave only a certain way or use only certain terms as a caregiver. Along with that anger comes a large dose of intimidation, fear that I am not doing things the right way.
Even as I write that last paragraph, I want to backtrack, worried that I sound unsympathetic.
But the truth is that everyone’s situation is so different. Obviously being a person facing Alzheimer’s is different than facing Lewey Bodies is different than facing dementia caused by a stroke is different than…on and on
And being the person facing dementia in any form is different from being that person’s caregiver.
And caring for a parent is not the same as caring for a spouse. Caring for a husband is not the same as caring for a wife. Caring for someone in your home is not the same as caring for someone in a facility.
And even narrowing it down to wives of husbands with Early Onset Alzheimer’s, every marriage (every individual in that marriage) has a history before the onset that affects how we behave afterwards. I cannot speak for anyone else, not caregivers, whether children or spouses, and certainly not anyone on the Alzheimer’s spectrum.
This is all very obvious, but it seems important to remember every so often (for me at least).
We are all seeking a sense of commonality, the Aha! moment of recognizing our situation in the situation of others. And there is real sustenance to be gained in our connections. Yet sometimes I need to step back and acknowledge the differences as well. Doing so allows me to respect other caregivers and care receivers within the context of their specific lives but also frees me to accept my own strengths and limitations on my own terms.