Our minds work in mysterious ways. What triggers some utterances from the mouths of someone with Alzheimer’s disease and dementia can be mind-blowing to the listener as I’ve learned first hand. The associations that they make and willfully say aloud can be very hurtful and they are not aware of the power of their words nor the sadness that it evokes to the recipient. I try to figure out what makes their minds tick the way they do and I try desperately to unscramble the mixed messages, but to no avail. It is heart-wrenching to witness and even harder to comfort myself and them.
I feel utterly alone. The worst part is that they don’t remember what they say to me. I can’t explain to them why it hurts. I can only change the subject and move on, even when my heart is heavy with sadness, hurt and pain. They forget what has been said when I change the subject, but I continue to remember and try to put on a happy face. But the pain digs deep into my soul.
It is hard to manage and be a caregiver to someone whose mind is not working properly and I have two of them at present. I’m learning the hard way to go with the flow, to deflect conversations and to change subjects quickly in order to protect myself. I bite my tongue…a lot! It isn’t easy. It’s like I’m on edge during every conversation as I do not know what will come into their minds and out of their mouths. It changes moment to moment, sometimes circling back to reality, but many times, there are misunderstandings as their brains fire and connect or disconnect at a moment’s notice. I think it would be easier if they weren’t family members for then I wouldn’t feel the pain of the stings or hold onto their thoughts. I would just let it be. I would be able to rearrange the conversation later in my head and remind myself that it’s not about me, that it’s simply the disease talking. I wouldn’t take to heart so deeply what is being said. I wouldn’t get caught up in their confusion. I would simply be able to redirect without trying to explain myself or reiterate for the thousandth time what the truth is or reiterate the lies that a loved one is resting instead of allowing their pain to hit them again and again.
For them, for me, for our family, for the healthcare workers.
So today, please send out a prayer of support and healing to all who care.