Wish you were here.

Such a wonderful phrase, by turn light and breezy, and then filled with longing and emotion. It’s something you’d say to someone who is, in fact, not with you, on a postcard or in an email or text (or if you’re old fashioned, a phone call).

But I’m finding it holds even more anguished meaning when the person I’m wishing was here is, in fact, right in front of me.

Dementia, in whatever form it takes, is a cruel thief who leaves you with memories from long, long ago, but steals your moments to make new memories. And depending on the age of the person, and you, it can leave them with little to no memory of you.

Sometimes the person who has the disease has an idea that they are missing something, that they are confused. Sometimes, they say “I know I’m not remembering this correctly,” but you hesitate to fill them in, because you watch the pain on their face when they cannot connect to the story you are telling them.

Our lives are a collection of memories, of moments both precious and painful, joyful and sad. Moments that we look back on and understand who we have become because of all of the memories.

However, when we start losing some of the memories, we start losing bits of who we are. We can’t remember some things that caused us to make big changes. And sometimes we can’t remember the love that held our world together.

Sometimes, we lose our children, forgetting who they are because we have lost the memory of their arrival, or confusing them with someone who still lives in the memories we can access.

And for those of us on the other side, when the memories are gone, we flounder for the connection, the reason that we are invested in this person. We know who they are and why we love them, but when they have lost it, we are left unsure of just what it is we should do.

It is so easy to say let them be where they are, don’t press them to remember. Try to accept them as they are now, without adding stress.

But when they are someone at the center of our lives, we want so badly to reach out and hold them to us. We want to open their minds and pour in the memories we still hold, desperate to bring back the parent, the grandparent, the partner, the spouse who means everything to us.

Dementia, the word we most commonly use, is actually not a disease itself, but the symptoms of a variety of illnesses. The most common cause is Alzheimer’s but that’s not the only cause.

But dementia generally includes symptoms like memory loss, cognitive impairment, language difficulties, spatial and visual impairments, and changes in mood, behavior and personality. It can happen over a long period of time, it can progress rapidly, or it can fall anywhere in between. It’s not predictable and is different for everyone experiencing it.

What it is not, is a normal part of aging.

We all get somewhat forgetful as we age. But dementia’s impact on memory is far stronger. And as of right now, there is no cure. There are treatments for symptoms, and there are support groups and skills that can be learned to help. But there is no stopping it. Catching it early gives you time to learn to manage it as it progresses.

But part of living with and loving someone with dementia is learning to live with grieving the loss of someone who is still here.

It is learning to accept that someone who is the star in so many of the best memories in your life can’t share them anymore. You can no longer talk about birthday parties that went awry but were hilariously fun, about vacations that were life altering, about marriages and births and deaths, about quiet walks on the beach and the night you sat up together crying over a child’s mistake, or all night giddy over their success.

You find yourself alone with someone that was once a touchstone to you, unable to pull them back into the world you have shared for so long.

If I have ever been truly angry with life, with the universe, it is because of dementia. Hurts I can recover from, losses I can handle, disappointment and grief I can take on, because I have a precious few who have shared so much in my life that they know me and know how to support me.

But dementia has stolen that. They no longer know who I am, and I have lost my support. And I have lost my way in how to support them, because I don’t know who they are going to be today. I can’t anticipate their needs, I can only react when I see them and hope I get it right.

I know many of us have had dementia cross our paths, one way or another, and my heart is with you. Give yourself the gift of going back over those precious memories, and find a friend or two who is dear enough to let you share. Hold a story time once in a while so you can keep your loved one alive in your life, even if they can’t join in. Do your best to hold on to the memories for you, keeping them alive and well in your heart.

Oh yes, dear God I wish you were here. I wish I could unravel this disease, untangle the memories and bring them back so I am not losing you over and over again, each day.

But I can’t. All I can do is love you, fiercely, unquestionably, and hope that somewhere inside, you understand why this person you don’t think you know is so devoted to you.

Dementia is a thief, and it has stolen so much. But I vow, it will never take the love.

Elisabeth Strillacci covers crime, courts, Spencer, East Spencer and Kannapolis for the Salisbury Post.