A glimpse into a life with dementia
She sits. Stiffly. Leaning to one side. Asleep. As usual. Her brown eyes are droopy, tired, and vacant. They have softened and sunk in even more into her deep sockets. The coarse hairs I used to pluck from her chin for years grow profusely. Her skin is dry and flakey. Translucent. She sports a haircut that is entirely about convenience. I can relate. We both need simplicity.
There’s food around the corners of her mouth. Dinner is half an hour away. How long since she’s eaten last? Her sparse and thin eyelashes are filled with sleep that a warm, wet washcloth just can’t get out. And in wiping, I cause one eye to stick shut. It takes a while for her to force it open again, much to my relief. It’s obvious her eyes are dry. I wonder if they hurt. I wonder who I should mention this to. I wonder if it really matters. Would they remember to give her drops anyway?
She’s having a hard time staying awake. Focusing. I wonder if it’s her blood sugar. Does she need some insulin? Or sugar? Have they tested her today? Am I just looking for an excuse?
She’s wearing a nice cardigan. Looks new. Hasn’t yet been massacred in the industrial wash. New shoes too. Thanks Rosemary. Together they overshadow the elastic waist polyester pants. Practical. That’s all we’ve got left. I try not to think about the smells. The bad breath. The stale clothes. The diaper that needs to be changed.
Today I get a smile. But no sparkle. I don’t think she knows. It’s so much better when I bring the kids. For them there is no loss. They get a smile. And I can easily pretend it’s because she recognizes them. She knows they’re mine. She knows they’re hers. She knows I’m hers. But today it’s just me. And it’s not enough.
I’m making a list in my head. The things she might like me to do. Should I soak and rub her feet? Massage her scalp? Say the rosary? Turn on an oldies radio station? Hold her? I want to be a good daughter. I wish she could tell me. I wish she had words. But I am reminded to be careful what I wish for.
I get a rare sentence. “What do you want me to do?” Really? I was just thinking the same thing. “Nothing Mom. You don’t need to do anything.” What do I want you to do? Get better. Sneak out of here and come pounding on my door, getting me out of bed to tell me it’s all been just a terrible mistake. That you’re back. That you’re capable. That you’re my mom again. That you’re so proud of me. That you’re so excited to share in my life. For my husband and children to know who you really are. For me to know. To hug me and hold me and teach me all of those things left yet to teach. Or…
Die. Let us all of the hook. End this suffering. Find some joy. I’m thinking, for you, but is it possible I mean for me? Am I that horrible? Isn’t that just incredible? Get better or die! What a good daughter. No wonder she is so uncomfortable. No wonder she cries. Get better or die. My request. My recommendation. Does she read it on my face? Is it there every time I come? Smiling.
I’d like to scratch that one from my mental record. Can I do that? I scour for something more appropriate. Realistic. Kind. Compassionate. How about, just let me love you. Crap. How deep do I have to look? Can I love you like this? In a tangible way? Can I find the value? Can I find the meaning? Can I find your spirit? Is it there? Do I need it to be? Can this be enough? Doesn’t it have to be? It’s all we’ve got left.
You’re not going to get better. You are going to die. Slowly. Painfully. Humiliatingly. And most likely alone.
The shame. The guilt. The struggle. The separation. The pain. The sorrow. The regrets. The misconceptions. The love. The loss.
Will I remember this when it’s my turn? When it’s all I’ve got left?
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