You don’t know what to say. Your friend has shared they have Alzheimer’s, or you found out from their spouse or from another friend. You don’t know how much they remember. You don’t know how advanced it is. You don’t know how to love them and be there for them. So you do nothing. You act like it’s not there, but it is. Or, you find yourself calling less, keeping the conversation light, and in time, you don’t mean to but you know that on some level you’ve pulled away. It’s difficult to learn how to be a friend to someone who has dementia/Alzheimer’s.
I know because I’ve been on both sides of this. When my mom was living with me I had several neighbors who avoided us–regularly. They’d wave, be cordial, but I could tell that they were afraid I’d ask something of them, something they either didn’t want to do or were too busy to do. Of course, I’m speculating. I don’t know exactly what they were thinking, what their motives were, I only knew there was this unsaid un-comfortableness.
It used to make me angry or hurt or something. I needed them. I needed a friend. My mom needed people to care about her, and yeah, I could use a little help or relief once in awhile.
And now, I’m experiencing it all around me. Neighbors, friends, community connections…I hear of someone with the “A” diagnosis, and now I, even with all my experience, find myself reticent as to what to say or do.
The other day I had a dear friend tell me she had terrible news–she’d finally (after years of not knowing exactly what was “wrong,” had been diagnosed with Alzheimer’s. This was the third time she had told me the news. Each time with the blow to the chest reaction she probably experienced when the doctor told her and her husband for the first time. I held her, reeling. I held her a long time, standing in my driveway, wanting somehow for my strength and comfort to pass through me to her. I told her I knew. Yes, I knew.
I had decided a long time ago with my mother to neither lie, play along, or enter into their delusional world.
Why? Selfish, really, or at least in some ways. I decided that to keep us both “safe” (and from becoming permanent residents of crazy-land) that it might be best if at least one of us kept one foot on the ground–over here. I’m not usually that practical but it messes with your head and your heart to play with another person’s delusions.
I held my dear friend and I told her it would be all right. That she was and is still my friend, and it’s okay if she forgets my name. It’s okay if she waves at me and draws a blank. It’s okay. I’ll remember for the both of us.
And yet, I must admit that at times I avoid her. I don’t exactly know how to jump in and out of her world. I feel like I do playing double dutch jump rope. Two ropes swinging in my face, I have to get my timing, make a couple of false starts, avoid, delay, and then duck and jump in order to plant myself into the middle of her world.
That’s why I hate about disease, any disease really. I hate that it isolates us. I hate that pain–physical or mental–separates us, overwhelms us, and keeps us like a violent abuser away from health and goodness because if we get too close someone might see–and we just might want that wholeness for ourselves. We just might have hope.
I know she needs me. I want to bring her joy and peace. I’m not afraid of the disease, and that makes me somewhat valuable. But I have to be honest, I don’t know exactly how to be her friend.
I know that it’s important to remind her that she is and will always be “Lydia” (fake name). That her essence, her laugh, her smile, her way of seeing the world is and will always be in many ways, true and will remain. I know that in time she will forget so much–what keys are for–what does that black box at the end of the driveway do, that I will become no more than that nice girl who always waves, and that some strange man keeps trying to sleep in the bed with her each night. I know what is to come. I just don’t know when. But I also know that for a very long time, if not until the end, that something of the essence of my friend will remain.
And that is perhaps the gift I have to give her–to see that kernel of my friend long after others lose sight, get frustrated, get angry, give up or let go. I will still see her in the smallest of gesture, in the slightest of smiles. I will remember.
I’m still figuring out what my deal is, why it’s so hard to approach her at first, what my hangs ups are about all of this. I’m still asking myself what it is she needs and what I have to offer. For one thing, something as simple as to share a cup of tea. She still likes to eat. She still can enjoy a bouquet of sunflowers for her table. We can still laugh or go for a short stroll. It isn’t that she needs much, just something. To connect.
And all I know to do is to keep on pushing past this initial awkwardness. To show up. To open my arms. And to love her(and love myself) today–just as we are.