Shoulder to Lean On

What struck me today is that one of the hardest parts of having dementia is the loneliness. No one understands the pain, the fear. Those that go through it lose the ability to communicate so there’s no one to hold our hands to the end who really gets it. Those outside try to understand but only so far. We tap into their fears. They don’t want to go through it themselves, so they avoid the topic.

The number one question is: “Who is a safe person?” Who can we share our fears with without the need to be “positive”? Who can we trust to look our fears in the face and not look away? Who can we bare our souls without fear of rejection? Who will say “I can’t understand but I love you and I’m here”? Who won’t minimize our fear because they’re dealing with their own and don’t have the capacity themselves to be a support.

I know it’s scary. I know people don’t understand. I know there are people that love me but have no idea how to support me. Here’s what I need:

No denial. This is happening to me. Not facing it means wasted time. Lost time to tell those I love, “I love you!” Lost time sharing the memories that only I know and once I’m gone, they will be lost forever. Denial robs me of the chance to say “Goodbye”.

No platitudes. “It’s all going to be okay in the end.” These are great in theory, but right now, they’re completely unhelpful. The end for me will be terrifying. I won’t remember the ones I love. I’ll need diaper changes and medic alert buttons. I’ll bankrupt my family getting round the clock care. Eventually I’ll pass and go to Jesus but until then it will definitely NOT be ok. I’m not afraid of death but I’m terrified of what will lead up to it.

No half-truths. “People love you.” Many people do but the ones that matter think about what I need not what they need. People love the person I was but don’t care enough to check on the person I am. They don’t call to see how things are going or listen to me cry. There are some that do but I still feel alone and unloved much of the time.

Unhelpful truths: “God is with you.” He is but in the here and now spiritual arms around me aren’t helpful. Too many hours are spent in tears calling out to him without answer, I don’t need to hear that God didn’t do this, I need reminders that God didn’t give me this pain but is with me in the pain. Show me God through you. Don’t rely on Him to show me.

What I need is love and support. The world is cruel and I am broken. I need to hear the words, “I see your pain and it is valid”. I need hugs that come with no words. I need validation that my fears are real and being a Christian doesn’t mean we’re fearless, Sit with me in that fear. Love me in that fear. Give me a shoulder to lean on, not brush off.

Photo by Marco Bianchetti on Unsplash