Month: March 2022

Nothing remains quite the same. Mom’s condition worsens with each passing week. These days it’s a toss up whether she’ll know me or not. In the afternoons, after lunch, they lay her down to take pressure off her behind – they’ve had to adapt their care to her changing needs. She cannot move her body anymore, can’t voluntarily move her legs or her feet – though they tend to twitch a lot.

I arrive today after lunch and she’s resting, her eyes are closed. I lean over and say Hi Mom, how are you? She opens her eyes but there is no recognition there. She is always now looking to the left, as if she sees something no one else can see. She meets my eyes briefly then looks off. Nothing in her face changes, no crinkling of her eyes, not a glimmer of her mouth turning up in a smile. I know that she doesn’t know who I am. But I say “I’m so glad to see you” and I smile and reach for her hand. I ask her if she wants to go outside for awhile and she manages a yes. The ladies come in to dress her and put her in the wheelchair while I wait outside in the hall. I can’t bear to see her inaction in action – I can’t bear to see her so terribly helpless that she has no say in what anyone does to her now.

Once she’s ready we head outside for the sunshine and the wind of a 80 degree North Texas afternoon. We walk and I talk to her, of things she may or may not understand. I have no way of knowing if she comprehends what I say. We go around the building and I remark on the snowy white buds on the trees and how beautiful they are. They’re gorgeous, aren’t they Mom? I say. She doesn’t respond. We stop by my new car and I say “look Mom, look at my car – isn’t is beautiful?” She makes a sound I can’t comprehend but I’ll pretend she’s saying yes, yes it is beautiful. I kneel down next to her and stroke her hair and say “are you glad to see me?” She says yes, I think. I say do you know me? Am I Julie, your daughter? She looks at me but there isn’t anything there. I wish I knew what she is thinking, does she think at all? How would anyone know?

I choose to believe she understands me at least. I choose to believe she’s there somewhere, but I do wonder if I she knows when I am NOT there. Like last Friday, when she recognized me and smiled hugely and listened to me talk – when I said I’d be back soon – did she know that I meant it? And now, when I come back and she doesn’t remember me – will she know later that I was there? Will she wish I was there? Will she miss me? Or does she truly live only in the moment?

I stay about an hour, first trying Willie Nelson songs, then switching to Jimmy Buffett. Today nothing captures her memory, nothing makes her react. I sing anyway and hope she’s not completely put off by my voice. Max is out there with us, and I worry about him. I see my Dad in him – old and weak, but mentally still sound. I hope he has plenty of visitors. We chat for a minute, but then I let him enjoy the sunshine while I sing, badly, first Good Hearted Woman, then Highwaymen, then moving on to Cheeseburger in Paradise and Boat Drinks. I ask Mom if she remembers us going to New Orleans. There is a tiny spark there and I notice. I hope it means she does.

I can’t stay too long – it hurts my neck and back to lean forward so I’m close enough for her to see me and hold my hand. I am unsure if she’s actually holding my hand – it’s quite a grip – or if it’s just that her hands are turning inwards so forcefully that when I slip my hand in hers she simply can’t let go. It hurts my heart to watch this agonizing decline, but I can’t abandon her. I absolutely won’t. Even if I only stay an hour at a time, I’m going to keep coming as often as I can. I don’t want to regret anything when the time comes. I want to know that I did everything I could, everything I could do so she knew I loved her more than anything. Even if the time I’m there I could absolutely be getting a million other things done – there’s time for that later. There’s going to be time for me that she won’t have. So I sit and I stay as long as I can stand it. She can’t talk to me, and today she isn’t even looking at me, but I stay nonetheless.

Maybe next time she’ll know me. Maybe she won’t. But I’ll be there anyway.

Mom and I used to adore Jimmy Buffett. I might be terrible, but I’ll keep singing and remembering her there with me. Changes in latitudes, changes in attitudes, nothing remains quite the same. With all of our running and all of our cunning, if we couldn’t laugh we’d all go insane.

Sometimes I wish I smoked. A terrible habit, to be sure, but it just looks so peaceful, relaxing. God knows I could use some of that. Seems like it’s just the thing to take a bit of pressure off. A physical time-out. I often imagine that I could do it. A big inhale and a looonnnggg exhale, letting out all the worries of my mind.

I’ll never do it of course. You don’t grow up with two parents who smoked – in the house, in the car, everywhere, and think smoking is cool. At least I didn’t. I hated it. I would wave my hands dramatically in front of my face and act like I was dying of secondhand smoke inhalation. Every time one of my parents lit up I would move a bit further away. I couldn’t stand the smoke, the smell – the way it lingered on clothes and breath. My eyes watered, my throat closed up.

No matter how I tried I could never convince them to give it up. Mom tried – she tried a LOT. But it never took long for her to pick up one, then two, then multiple cigarettes a day. Alzheimer’s is the only thing that worked, ironic as that is – she forgot she was addicted. She forgot the pleasure, the sensation of holding something in her hand, the nicotine rush. She forgot the relief it gave her.

Dad told me how Mom used to drive around Austin, a lost soul, huge sunglasses hiding her pain, smoking in her yellow mustang. Her own Dad had died and she didn’t get on with her Mom. She was aimless and heartbroken. I can see her now… I identify with the person she was then. I can see how smoking would take some of the pain away. Austin was, of course, a different city back then. Women smoked and wore things on their heads while driving. Bizarre, but true. Part of me wonders what it would have been like to live back then. Getting lost in your car, instead of on your smartphone.

Almost 15 years ago they finally decided they would no longer smoke in the house. Due to the birth of their first grandchild they vowed to make the house smoke free. They kept their word, and only smoked out on the porch or in the garage. They painted the entire house, ceilings as well, and the hazy, yellowed ceilings and walls came to life again. The garage was always fuggy with smoke and I could never understand how they stood it. My brother would go out there to ruminate with Dad, but I never could. I’d open the door a half inch just for them to be able to hear me, then wait for them to come in.

We’d be playing dominoes and there would be smoke breaks. Get a beer breaks. Bathroom breaks. Get dessert breaks. I always leaned more towards the dessert breaks than anything else. Mom was famous for providing whatever food my brother and I desired on these visits. Chocolate pie, cheese balls and fritos, cheesecake, chocolate cake, peach cobbler, you name it she had it. Anyway, I digress into memories….

Anytime I am stressed – which is the majority of each day – I think about how they smoked. I think about my Dad’s last years. The last of which he did not smoke again. He was forced to give it up due to his failing health. But he never stopped hankering for one. He never got over the mentality of it. I donated his last box of cigarettes to the homeless shelter at the Episcopal church in Denton. I still wonder what they thought when they saw that box of ciggies in with all the clothes. I wonder if they actually handed them out. I wouldn’t normally be the person to perpetuate a terrible habit but I couldn’t help but think how grateful they’d be….

Stress is a terrible condition. When Baby Girl gets to me and pushes all my buttons I just want to take a smoke break. I want to say HEY GIVE ME A MINUTE. Smoking isn’t the answer of course, neither is wine – I’ve tried. But I completely understand the concept. A few of Mom’s caregivers smoke and I often wonder if she enjoys the smell lingering on their clothes, if it makes her feel comfortable and takes her to “back when.” She doesn’t seem to mind it, certainly. I told one the other day they should let her have a drag – I wondered if she’d remember how. Of course we didn’t do it, but I knew Mom was thinking about it too.

I’ll never smoke, of course. But couldn’t I just have a little smoke break every now and again?

Today was a hard day. My Dad’s 76th birthday. A day full of too many silences. Too many wishes. Too many empty spaces. In truth he’s not 76 at all. He’s forever 75. I’m sure in heaven he’s young again, young and carefree and full of piss and vinegar. Maybe the age he was when he started dating my mom. Maybe the age he was when he went to Vietnam. When he went to Europe for the first time – a young buck in a brand new, sophisticated world. Maybe the age he was when he flew his first helicopter, or maybe he’s in his 30’s – secure and happy with his life and chomping at the bit for whatever is coming next.

Today my Baby Girl and I went to his house. The house he lived in for the final three years of his life. Three years that he was miserable, I know. Three years that I’m sure he wished he could’ve just skipped altogether. He was happy in Winona, he didn’t want to leave. He had to leave, for Mom, but he wasn’t happy about it. So I never really feel his presence here, in Pilot Point. I think I’d have to go to Winona for that. But still, I felt it important to have some sort of closure, some Goodbye, for Baby Girl. The closest I can get to his presence is sitting on the back porch, watching her play. He loved to watch her play. But if I look to the left he’s not there. It’s just an empty space, where he should be.

And as it turns out, as I am getting a High School in my backyard, he would have been getting a Middle School in his. And how amazing it would have been for Fu Fu to be able to go to his house after school each day. We talked about that, her and I. We wished it had been so. We played some on the playscape and then collected rocks to take home for the roses. We went through the house room by room and imagined how it was, and I thought about how it will never be again.

After that we went to see Mom, and we brought her outside to enjoy the weather. Mom watched Baby Girl – her eyes followed her around – but other than that she was very unresponsive. I held her hand and played Willie Nelson songs for her, in honor of Dad. I told her it was Saturday, March 5th. No response. We listened to Seven Spanish Angels, A Good Hearted Woman and Whiskey River with no response. I kept hoping for a spark, but there was nothing today. Pancho and Lefty and the Highwaymen fared no better. She said she was happy I was there but other than that I got no words from her today. She often looks at me now like she’s wondering who I am. It doesn’t sadden me, I know she would know me if she could.

On the way home we stopped at Brookshires – I wanted to buy a piece of chocolate cake to put a candle in. Baby Girl argued for the bright blue frosted cupcakes and finally I gave in and let her make the call. Call me sentimental I guess. I think I was hoping to feel something more akin to peace than to sadness. But it didn’t work. It just made his absence even more painful to bear.

Saying Goodbye isn’t something you can just do. You can call it goodbye, you can call it closure, you can call it whatever the hell you want but in the end it’s just another way to remember the reason you’re sad. Maybe in the long run I’ll be glad I did it this way. It’s hard to lose his house. The last place I saw him alive. The place where he died. The place where he tried so hard to be everything we all needed him to be. Until he just couldn’t anymore. Even though Dad isn’t there in any way, I will miss that house. Not as much as I miss the one in Winona, but I’ll miss knowing he was there. Knowing your Dad was THERE is the hardest thing to lose.

I might’ve said goodbye to your house today, Dad, but you’ll never be gone from me. It’s my mission in life to make sure that Baby Girl remembers you and Mom. That she treasures who you were and how much you loved her. As long as she has me, she’ll also have you.