Author: Julie

I've spent most of my adult life being a hunter/jumper riding instructor, horse trainer and business owner. Married at 35 - a child was agreed upon and born in 2014 when I was almost 39. Life as I knew it had gone for good...

Changes in Latitudes


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.

Smoking


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?

Saying Goodbye


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.

Enjoying the Sunshine

Mom and I have always been sunbirds. We love to be outside, in the sun, enjoying nature. For her it was gardening, for me it’s horses of course. With the weather coming up about to be dreadful, today was a good day to go take mom outside for a while. It’s about 68° and mom is in her high-back wheelchair. As I push her around and talk to her about everything from the weather to Baby Girl to horses she just soaks it all in, but without making a sound and without giving any indication at all that she is listening. But I know that she is.

Two weeks ago mom was very very sick with Covid. I was very afraid that she wasn’t going to make it. But with two IV infusions of vitamins, minerals, and whatever else they could throw in there she brightened up considerably. She made it through. She was smiling and talking again and her eyes were bright. She was very aware of her surroundings.

Today mom is not so bright. Her head lists to the left and they have given her a neck pillow so that she won’t strain her neck muscles. Her whole body kind of slumps to the left, and her legs stay straight even when they should bend. The two ladies that help her move from the recliner to the wheelchair do a great job, considering they get absolutely no muscle movement from mom at all. I’ve been down low so that she can see my face, and I take my mask off so that she’ll know who I am. I say hi mom and give her my best smile. She gives me a little half smile back and her eyes tell me she remembers me.But there’s no more reaching up to my face and patting my cheeks with her hands.

I tell Mom I love her, as I always do multiple times each time I visit. She mumbles back I love you too, but I’m not sure if it’s a response simply because she’s expected to make one or if she actually knows what she’s saying. It’s hard to tell now. She’ll tell the girls she loves them too, if they say it first. They do love her, and I am so grateful. I talk to Mom as we walk. We stop and fill up her bird feeder with the bird seed I bought. I fill up another feeder that’s empty as well, because I’ve got some left in the bag. I don’t know if Mom can even enjoy the birds anymore but that doesn’t stop me from trying.

Mom’s chest sounds awful. I’ve brought her a Coke from McDonald’s and she takes a sip with the straw. It takes her a few tries but she can still do this. As she tastes the Coke her eyebrows raise up and I know she still likes the taste. Best thing ever, huh Mom? I say. But then she coughs and the gunk in the back of her throat sounds scary. It reminds me of Dad basically drowning in his own saliva and I am concerned. I understand this is a constant now – she can’t truly cough anything up and there’s only so much the medication can do. COPD has been an important factor in her illness and not for the first time I wish she had never picked up a cigarette.

We sit in the sun and I take her hand in mine. I rub her fingers while she dozes. I can’t stay long – there’s always somewhere else I have to be or something else I have to do. Time is not my friend. Nor hers. I rewind the tape in my head and put us both on the back porch of their house in Tyler. Chilling out. Chatting while Mom smokes. Me in the swing drinking wine. Watching the birds and the squirrels. Talking about what to cook for dinner and where we want to go shopping tomorrow. Me telling her all about my life and her listening and trying to solve all my problems.

I would give anything to go back. Watching Baby Girl play in the little pool, or on the playscape Grandpa bought. Hearing my Dad pontificate on some topic, or tell a story I’ve heard a hundred times. Laughing and enjoying life, de-stressing and knowing that my Mom and Dad still have my back. Not aware yet that there will be a time when they don’t. When I’m on my own and have to be the Strong One At All Times.

The past is gone, evaporated like smoke. So, right now Mom, I’ll hold your hand and dream with you in this beautiful sunshine.

Merry Christmas in Heaven

Well, Dad, I think I pulled it off. While everyone else is gearing up to have their big Christmas Day dinners and exchange gifts with family members tomorrow after waking up early, eating chocolate, and watching the littles dive into their presents, I have managed to get mostly everything out of the way today. So tomorrow will be all about Baby Girl and HER presents from Santa, and visiting Mom. And relaxing. And I’m all about that.

I start planning for Christmas in September. I love the whole Christmas season. The lights, the music, the gifts, the wrapping, the magic and the joy. Making fudge. Making cookies. Making memories. But these last three Christmases have been anything but easy. I start planning in September because I know that come December, all hell has usually broken loose and I had better be prepared.

Three years ago my parents had first moved to Pilot Point and it was a month full of the flurry of unpacking, and helping Mom to understand what was happening. Christmas Day with Mom was difficult. She was overwhelmed and couldn’t even open, much less appreciate, her gifts. Though she tried mightily it was obvious to all of us that Christmas as we had always known it was gone.

Two years ago my Dad lay in a hospital bed in Ft. Worth fighting for his life. It was me that bought, wrapped, gave, cooked and otherwise “made Christmas happen” for Baby Girl, my brother and his kids. My Dad remembered none of it. Had no idea that we all trooped to Ft. Worth on Christmas Day to visit. Mom cried when we visited her on Christmas Eve, having moved into a memory care facility just at the beginning of the month. Overwhelmed and emotional, it was hard on everyone, especially her and Dad, who didn’t even get to see each other.

Then last Christmas Dad actually was here, in my home, celebrating with us. He spent the night and was present for the presents Santa brought. He helped Baby Girl un-do and un-box and set up and it was all just so bittersweet. He was here, but Mom wasn’t. Mom wasn’t forgotten, of course, but bringing her home for even just the day wasn’t an option. Mom relies on security and being able to make sense of things. Routine is all important. For any of you that may wonder, “sun-downing” in Alzheimer’s patients is a very real, and very scary thing. Tony made a brisket and we ate that with a few other sides. Nothing crazy. Nothing that would make me break down and cry like I did on Thanksgiving when I couldn’t figure out how to make Mom’s famous gravy.

Fast forward to this year.

Dad – last night I cried. Huge grief filled balloon tears. I felt no Christmas joy, not an ounce of Christmas spirit. This month has gone so quickly. We did all the Christmas things – I bought gifts (online except for the Wine Store – my favorite place to shop), I took Baby Girl and Sissy to Frisco Radiance! A lights spectacular – or so it said. It was really less than impressive but then I’m fairly difficult to please these days. We made fudge. We made Christmas ornaments for teachers and friends. We went to a Christmas party. Baby Girl did a gingerbread house. We took a lot of pictures. But somehow, Dad, it all just seemed so…. quiet.

I just can’t get used to the silence. To the emptiness that surrounds me. Last night it erupted within me. It was all I could think about, all I could focus on. You aren’t here, you aren’t here, you aren’t here – like a broken record. I went to bed full of sorrow and tears.

I woke up this morning with a new purpose. I wrote my list out and started in cleaning the house. I made banana bread. I vacuumed. I sorted and put away the laundry. I windexed. I made corn casserole per the Princess’s request. I did all the things. At noon I put in the frozen turkey I had bought at Kroger. Two hours and forty five minutes later I had a turkey that was actually edible! At 2:00 the in-laws showed up, and just before them was Sissy. Everyone was assembled and as we sat down to eat I smiled to myself. Hello Dad I said silently. I feel you. I know you would have been amazed at the concept of the frozen turkey. You would have ate the store-bought gravy. And if you were here I would have had cranberries from a jar. I smiled because I could hear you. I could feel you. You were here, even if I was the only one who knew it.

Amazingly, Dad, today I’m ok. Today I put it all together. For you. For the us that we used to be. And I think I did alright. Tonight Baby Girl and I will make cookies for Santa and once she’s asleep I’ll sneak the gifts in and do the stockings. We have stockings for everyone in the house, Dad. All four of us plus the three cats, two dolls and one stuffed Cheetah. And trust me, they ALL will have been filled by Santa. The magic is still alive Dad, still here. Baby Girl is having a wonderful Christmas and tomorrow will be even better. I won’t cry when we visit Mom, I promise. I’ll make sure that I hold it together. I’ll make sure Mom feels you, too. By sharing with her my Christmas Spirit, the Spirit that you somehow gave to me last night while I slept.

Thank you, Dad. I love you. Merry Christmas in Heaven.

Visiting

Yesterday I drove out to the Central Texas State Veteran’s Cemetery to visit my Dad’s grave for the first time. The headstone takes six to eight weeks after the burial to be installed, so I was very interested in finally seeing it. I picked up my best friend, Val, just this side of Ft. Worth and we were on our way.

The drive is about three and a half hours from my house if you factor in stops for restrooms and Diet Cokes. We arrived at the cemetery at about 11:30 in the morning. There was a lady sitting near a freshly installed headstone, just visiting her beloved. Val and I walk to find Dad’s among the rest in his “unit” as we called the collection of graves in that area. I was surprised to find that the marble was ice cold. You know it will be, but just how cold is pretty amazing. I laid my hands on it and instinctively I wanted to rub the side of it the way I rubbed his shoulder when he was dying.

We looked at the inscription. The Christian cross at the top. David Lee Thomas. LTC US ARMY. Vietnam. (Why only Vietnam I wondered) Mar 5 1946 – Aug 21 2021. BSM & 3 OLC. DMSM MSM ARCOM. Bullworker. Loving Husband and Dad. Val texted her Army sister to find out what it all means. BSM – Bronze Star Medal. 3 OLC – Four Oak Leaf Clusters. Defense Meritorious Service Medal. Meritorious Service Medal. Army Commendation Medal. Your Dad was a Badass, Val says. Well obviously.

She keeps the atmosphere light, as I knew she would. We joke about pulling up some lawn chairs and cracking open a few beers with a tribunal whiskey at the headstone, while kicking back and watching an Aggie game on the laptop. I can hear Dad chuckling. Just the kind of humor he appreciated.

Val goes off to pick up all the fallen over Christmas wreaths in Dad’s unit while I stay and talk softly to him. I tell him I miss him, that Fu Fu misses him. That we’re doing alright and that I’m taking good care of Mom. I don’t talk a lot but just absorb where I am. I kneel behind the headstone with my arms draped over it. I feel closer to him that way, as if I’m giving him a hug. I stay that way awhile. It’s very peaceful in this cemetery. I don’t cry – I just try to remember. How we laughed, how he loved, how it was over much too quickly. I feel him there, in my heart, but I do not feel any kind of spiritual presence. I never have, it just feels like he is very far away. There hasn’t been any kind of whisper or chill or anything that tells me he’s right there. I know he isn’t. I feel like he is at peace and in the presence of God. He can see us, and hear us, but he knows there isn’t any need to “be” here. We’ve got this. We’re alright.

I get up and wander around a bit. I notice coins on the tops of some of the headstones. Naturally I have to find out what they are for. I google it. A penny means someone visited. In military terms a nickel means they were in boot camp together, a dime means they served together and a quarter means the person was with him when he was killed. Val and I decide we will leave pennies and start to walk back to the car to get them. I get close and stop dead in my tracks. Val – look! There is a bright red cardinal on my car. Peering and preening in the side mirror. He flies off to a tree as we approach but presently comes back again. Dad, I say, quit showing off. Val takes pictures while I appreciate the moment.

I decide to leave a quarter as well as my penny. The coins will be collected about once a year and used for cemetery upkeep. In civilian terms a quarter means you were with him when he died. So I go with it. We place the coins and tell Dad bye. It was good to see you Sir, Val says. I know he’s answering “I’m glad you got to see me.”

We stop to eat at Cheddar’s and as we sit down at the bar I glance up and there is a bottle of Jameson straight ahead of my face. I smile. Dad, you are still larger than life. Still invincible. I feel something like the “let down” after Christmas – anticipation now satisfied and fulfilled. It was hard seeing that name in stone but I am relieved to know it’s perfect. The inscription, the place, the peace.

Bye Dad. I’ll be back sometime. In the meantime I’m glad I got to see you.

Mountains

On Saturday I convinced Baby Girl to let me take her earrings out and put the cute, newly purchased, reindeer ones in. I showed her how it doesn’t hurt to take earrings out and put them back in. Convinced, she let me do it. I got both stud earrings out which had been put in in the summer when Sissy took her to get her ears pierced. Then I noticed that her ears were bleeding a little. Strange, I thought to myself. They should be fully healed by now. Of course Baby Girl wanted to see the holes in her ears and thus immediately noticed the blood. She also then noticed how pointy the ends of earrings are. I noticed that she had what looked like blood blisters on the backs of her ears. I decided I better not point that out to her as she was already of the verge of backing out completely. We managed to get the reindeer earrings in and go to the barn Christmas party, with minimal fuss. Later that night when I took the reindeer earrings out I again noticed the little bit of blood. Ignoring this and her whining that her ears hurt, I wished Baby Girl a goodnight and left it for the morrow.

Sunday I told Baby Girl that we had to get the stud earrings back in otherwise her holes would close up. I was fairly certain that this would actually happen because it did not seem as if they were as healed as they should be; after six months?! At any rate I went at her ear with one earring and she immediately started crying and backing away from me. She wouldn’t even let me try. Convinced that it was going to hurt, a lot, she kept repeating that she was scared and that it was pointy. I was patient. I told her I knew it would hurt a little bit but not that much. Like pulling a tooth out. It wouldn’t last long. She still resisted. After thirty minutes of me desperately explaining that we only had two choices in this situation (go ahead and do it or let the holes close up) I finally succeeded in getting the earring in through the hole, only to have her scream like I was stabbing her with a fork in the eye. I still had to get the back on. Well, those little stud earrings are teensy tiny and you have to get a good grip on it in order to get that back on. Every time I went anywhere near her ear fresh hell would break loose. Huge tears and snot running down her face and I was all out of patience. I had no idea what to do. I am not a terribly patient mom in the first place and I was damn near the end of my rope. Of course the more irritated I got the worse she behaved, and vice versa. A never ending loop of frustration and tears.

After another twenty minutes I got the back on that one earring. To hell with it. The second earring would have to wait. I tell Baby Girl we will deal with it later. Exhausted, she readily agreed. We spent the next few hours watching movies and painting Christmas ornaments.

Baby Girl is never one for jumping up and getting ready for bed. She likes her bath but she’d rather be playing (on her ipad usually). So every night we struggle at bedtime. I want her to get in the bath; she wants to prance around the house in her underpants. I want her to get out of the bath; she wants to pretend she is in a submarine spouting water all over the bathroom while rising from the deep. I want her to get her PJ’s on; she wants to get her dolls ready for bed. I want her to brush her teeth; she wants another snack. I want her to get IN the bed; she wants to be a puppy rolling around and yelping.

Sunday night was going to be no different, even though every night I tell myself it will be. I tell her it’s time for her bath and I go and start the water. She morphs into a sloth and makes her way to the bedroom to remove her clothes. I tell her if she will *quickly* let me put that other earring in then I will let her have a gummy. She hides in the hallway. I tell her repeatedly to COME HERE and let me do it. I start out patient. I start out explaining why we must. I start out full of empathy and understanding.

It escalated like a house on fire. Pretty soon we are in flames with no hope of rescue. She cries, I cajole. She screams, I tell her come on it’s just temporary. I’m scared she cries, I tell her I know but we have to do it anyway. As she gets more and more worked up I get more and more frustrated. In my head I know that me getting upset isn’t helping, BUT I can not control it. I tell myself stop – you are traumatizing her – she will never get over this. But as she loses her shit I completely lose the plot. If I tell her fine, I’m done, we won’t do this she screams bloody murder and grabs at me to sit back down. She reaches for me, wanting me to hold her, which I do, but at the same time won’t let me touch her ear. I tell her you are making a mountain out of a molehill. A phrase I am sure she doesn’t understand. I tell her again that we either have to do it or we have to let it close up. She just cries harder. I am all out of options, all out of ideas, all out of patience and all of a sudden I just start crying, too.

We are a mess. For forty minutes we have battled. For forty minutes over an earring. I am angry, more at myself than at her, for not knowing how to handle this situation. Baby Girl and I are so alike that we battle constantly. I think – how will I ever handle her at 12? 15? How will I ever be able to control this attitude, this passion, this fire in her? Or more to the point, how will I DIRECT her attitude, her passion, her fire? How will I teach her that sometimes things have to hurt a little bit, in order to move forward? That pain isn’t the end of the world? That there is no choice in this world but to be brave? If I can’t even get through a forty minute battle over an earring without crying myself, how will she learn to control her own emotions? She hates being yelled at. I hate being yelled at. I can’t stand for her to be upset, I can’t handle her tears, and she can’t handle mine. Sometimes I try to ignore her tears and then she accuses me of not caring. Oh Baby Girl, if you only knew how much I care. That I have to walk away sometimes because it hurts to care so much. That you will somehow have to learn to stand on your own two feet, without me. That you will have to somehow learn how to be strong. How to be brave.

Baby Girl I want you to move mountains, not create them. We are on the same side, you and I. I know you are strong, maybe even stronger than me. My own strength I would give to you, but it isn’t what it once was. Life has been cruel these past couple years and my heart isn’t into life like it used to be. I was lucky to have my parents for so long, with their unwavering love and support. It kills me that you won’t have them at all. I hope the love they gave you for your first seven years has been enough. I hope you can look past the emotional grave I find myself in and realize I only ever loved you more than I loved myself. Move mountains, Baby Girl, and know that I’m never going to not be there for you. Battle on, Warrior, for I know the demons you are slaying. We are stronger than we think.

Waiting for Muff

When I walked in to Just Like Home yesterday the first person I saw was my Dad. Plaid shirt, patriotic hat, mustache, weathered face. Sitting there chatting with Nikki and Max. I did a double take and realized that it obviously wasn’t him. But put a few more years on him and a cane in his hand and the likeness was startling. Turns out he is Max’s son. I was momentarily thrown. I stole another glance just to pretend for a moment that it could be him, my Dad. Just to have a little glimpse of how things used to be.

I breathed in slowly and then I asked Nikki to get Mom in her wheelchair so I could take her outside. As we entered her room and I said hi, she looked up at me with a smile in her eyes and reached her hand up to touch my face. I was, as always, relieved to see her still know me. I help her sit up while Nikki gets the chair ready and then helps her stand and rotates her into it. Mom’s body is getting stiff. Her feet don’t move well – they are curling up from lack of use. Her head permanently lists to the left. She has trouble bending her knees when we put the foot rests on the wheelchair. In fact, she cannot bend them at all and we have to help her. She doesn’t seem to mind though. She is happy I am there and happy to be going outside on such a beautiful day.

As we walk around the perimeter of the building she holds my hand to her face with her left hand and I steer the wheelchair with my right. I tell her all about the last horse show, decorating the barn for Christmas and how we are going to a Festival of Lights in a few weeks. How I paid for the VIP tickets so I wouldn’t have to walk too much. I tell her about everything and anything and she soaks it all up. We hear Crystal out on the front porch animatedly telling stories about her lemon of a car and we go to investigate. Crystal is wound up and Mom gets a big grin on her face just listening to her. Crystal and Nikki are laughing and so am I.

Nikki comes over to tell Mom she’s leaving and she says “I love you” and Mom responds “I love you too.” I quickly say “but not as much as you love me, right?” Mom grins and says No! Nikki and I laugh. It is so good to see Mom like this. I ask her what she had for lunch and she pauses, then says “I have no idea.” We laugh again. There is still so much life in her. I cherish these times I get to be with her because I know the darkness that is coming.

Roxie, her nurse, says she’s aspirating some as she eats, which causes some coughing. Mom was very sick over Thanksgiving and I was extremely worried about her. She’s doing much better now, but I know our time together is winding down. Mom’s body and brain are failing her. Slowly but surely the disease marches its advance and there’s nothing left to fight.

I know Dad has gone ahead to “reconnaissance” the location. The problem is that he can’t come back to tell us about it. “I’m on recon” he used to say as he headed out. He also used to say that you had to be “postured” correctly before you could expect to get something done right. And he definitely was postured before he died. He made it very easy on my brother and I, he was a man that wasn’t leaving this world unprepared if he could help it. He made sure that Mom was going to be well taken care of. That we all were. He’s waiting for her there, so he can take her hand and show her the ropes of Heaven. He’s waiting for his “Muff.”

I, however, am so far from ready for it that I can’t even wrap my head around what it will be like when she’s gone. Right now I can still hold her hand, still feel her love, watch her smile and laugh. I always ask her when I leave “will you be ok until I get back?” And she always answers “yes.”

And I know she will be. The ladies here love her as their own. She is everyone’s mom and a bright light in their lives as well as mine. And I know she’ll be ok when she finally reaches out to Dad again – when she puts her hand to his cheek, instead of mine. When she sees the radiance of God and is free from the stranglehold life has on her. I know that Dad had to go first, so that none of us have failed her, so that she will never have been alone. She will have me until her last breath and then she’ll have Dad again in Heaven. I understand that it had to be this way.

I understand it, and I am happy to be the one here with her, but Lord, what will I do when she’s gone?

Veteran’s Day

Well, Dad, it’s been two and a half months. Ten weeks since you left. I suppose I am coping, I suppose things are going fine. I know you would want me to be strong, and brave, and holding it all together. But honestly, I’m a mess.

I’ve lost one of my main anchors. My stay, my rock. I’m out here drifting with one finger in the dam. I can’t handle even the smallest things anymore. Baby Girl frustrates me every morning, every night. I’m not sure how she’s coping with Grandpa’s death except to tell me every once in a while that she misses him. Baby Girl has strong feelings, has passion and grit. But she also is sensitive and can’t handle anyone being upset with her. Yet, she continues to upset us by not listening, not doing as she’s told, by giving me attitude and disrespecting me.

Dad, what would you do? You never told me how to handle her, your fu-fu. But you expected her to do exactly what you told her to do. And like the rest of us, she usually did. You never minded giving me a break, having her come to your house to play. You insisted the train table and toys stay in the living room, where you could watch her play. You had to know where she was if she wandered out of sight for a few minutes. She didn’t know it, but you always had her back.

Just like you always had mine. You would never have let anything bad happen to me that you could help. You did anything and everything for me. Even as Mom became unable to communicate you took over the every day phone calls and check in’s. I’m not sure if this was for my benefit, or yours. I know you were lonely, too.

I know the last three years were just damn miserable for you. Essentially losing the love of your life, your mobility, your independence, and your appetite. Losing your home in Tyler was a heartbreak you never got over. I still feel terrible that you had to make that choice, that what you (and all of us) felt was best for Mom turned out just to be a stop-gap before the inevitable. We all wanted more time. With her. With you.

But I was grateful you were close. I am grateful that Fu Fu had this time with you. The only light in your life these past three years, at least you had each other.

I miss you. Your belief that you were bulletproof, your confidence, your cussedness. Your willingness to do whatever it took to make us all happy. Family first. Pray to God. Be a good man and stand up for what you believe in. Determination, patience, persistence. Grit. But above all else, love. You loved us. You held on as long as you could out of love. I know you did.

Today is your favorite day of the year, Dad. You were always expecting a phone call on Veteran’s Day. Once Fu Fu and I made you an American flag cake. You were so pleased with it even though you only said “alright!” the way only you could. Conveying pleasure and appreciation with that one word. Today I am even more of a mess than usual. To not be able to call you and hear your voice is almost more than I can bear. I’m going to see Mom today instead. I’m going to go tell her how much we all love her and I’m going to think inside that I’m not really ready for her to join you, yet. I wonder if somehow she knows you aren’t here anymore. I believe she does. I believe she knows because otherwise you would be there. You would never abandon her willingly.

But you knew we would take care of things. Mom, and Fu Fu and ourselves. You knew you had done everything you could. You were more than ready to go.

In my mind you are still bulletproof.

I love you, Dad. Happy Veteran’s Day.

Better Days in Hell, part 3

I arrived Wednesday morning to be told that Dad had gotten a pain patch of Fentanyl. He was sleeping peacefully. Still no PEG line, though. Aunt Patty had done all she could. She has to leave to go get a COVID test before her cruise. So I sit with Dad while she’s gone. Not thirty minutes later they come to get him for the PEG line operation, finally. I walk behind his bed as we make our way downstairs. They show me to the waiting room where I sit and worry. I watch an entire documentary on the missing boy, Kyron Horman. I didn’t want to know all that. I can’t stand to think of missing children. I can’t sit still so I wander around the waiting room reading everything on the walls. Finally I am told Dad is in recovery and I should head back up to his room. 

Dad has done well. Aunt Patty and I are ecstatic at the thought of the PEG line. Surely this will solve so many problems. Dad will get stronger now. We are optimistic. They tell us he woke up in the elevator and talked to them for a minute. Aunt Patty leaves again, to drive home. She is going on a cruise that has been long planned. I know she doesn’t want to leave him but I tell her we will be fine. I am going to stay by Dad’s side. I will sleep here. And so I do. Every few minutes the alarm goes off for something. I swear all I have to do is take my glasses off to try and get some sleep and the alarm will beep. Or Dad will start moaning. He doesn’t do this because he is in pain, he does it just because he can. He has always done this – even back when I was staying with him at home I would have to go in his room and say “DAD. What the heck with the groaning?!” He would blink at me and say “I don’t know.” “Well stop it!” I say, I can’t get any sleep! He would even laugh about it. So I am not worried by the moaning but it does make it hard to sleep when you are less than 10 feet away from him. None of this bothers Dad, of course. The moaning, the beeping, the nurses coming in. He doesn’t care. He snoozes right on through all of it. I sleep fitfully and get a full hour and half between 1 and 2:30. At 4:30 I give up and decide to wander around the hospital in search of a Diet Coke. 

Diet Pepsi. Dr. Pepper. Shit. No Diet Coke. I settle for the sugar intake and try three different machines before I find one that will work. I head back upstairs and entertain myself while Dad sleeps on. After awhile the hospital wakes up and the nurses and staff start coming in every few minutes. Finally Dr. Azeem, the hospitalist comes in. He manages to get Dad to open his eyes. He asks if Dad knows where he is. The hospital, Dad croaks. And who is this next to you? He looks at me. My daughter. 

A bit later Dad asks me “where’s Patty?” and I tell him she’s gone home for awhile. He nods. Where is David? David is coming Friday Dad. Tomorrow. Another nod. Asleep again, I stand by his bed and smooth his hair back. I do this for hours. I am not good at being still and doing nothing, so I wander around the room and back to his bed – more hair smoothing – I wander out in the hall for a moment and come back. The nurses know me and ask if I need anything? They know I am here for the long haul. No, I say, I’m ok. Respiratory therapy comes in and gives Dad a breathing treatment and then she sticks a small tube down his nose and into his throat to try and expel some of the secretions. Dad fights hard but he doesn’t wake up. I have to hold his arms down as he tries to push the tube out of his nose. He scrunches his eyes up and groans and I tell him DAD, it’s ok, it’s ok, over and over. They go through this every couple of hours and I am beginning to wonder how in the heck I am going to do this for him when he goes home? Eventually I can’t stand to be in the room when they do it. I walk the halls instead. 

Thursday passes fairly uneventfully. I wait for the oncologist to come talk to me, and I never see him. Dad sleeps the whole day, only waking moderately when they suction his throat and lungs. I read, I write, I smooth his hair, I walk the halls some more. I go home and take a nap then return. Nothing has changed. I feel like someone is holding all the cards to this mystery and it definitely isn’t me. I only have the two of clubs, someone must have the ace. Who knows what is happening here? Why isn’t the nutrition making him stronger? Why isn’t he awake more? I get no answers as the day goes on and morphs into Friday. 

Friday morning sees the hospitalist checking on Dad and telling me “he is so weak.” He tells me there isn’t any way that Dad could withstand cancer treatment right now. As he is virtually non responsive, he wouldn’t be able to get in a car and go to the clinic for treatment. He tells me that all we are waiting on is the oncologist to come talk to me, then Dad can go home. There is nothing more that the hospital can do for him. I don’t read anything into what he is saying. I am still thinking we take him home with home health and he will get better. I realize it might be a very slow, very long process but I don’t for a minute think we are done here.

When respiratory therapy comes in she is alarmed by his low oxygen levels. Even though he is on full oxygen, his levels have dropped to a dangerous level. She gives him a breathing treatment, suctions his lungs, and frowns at the monitor. I am watching closely but I don’t yet understand the impact of what she is seeing. 

A couple of hours later sees me sitting next to Dad’s bed, typing away on my computer, when someone new walks in. I look up and see “palliative care” embroidered on her shirt. I close my laptop as my heart drops into my stomach. Somehow I just know what she is going to say. She asks if she can sit down and I say yes of course. The look on her face is plain. She isn’t bringing happy news. She tells me that they – the social worker, the hospitalist, herself – all think that Dad should be sent home on hospice care, not home health. “But the hospital bed has already been arranged by home health” I stutter. This is immediately where my brain went. Practical, as always. And then I ask the difficult question. So you don’t think he’s going to get better? She looks at Dad, then looks at me and says no. I say “but I have been waiting on the oncologist to come tell me what he thinks and he is supposed to be here at noon.” It’s almost noon now, she says. Let’s wait and see what he says, then we can talk again. I am getting antsy because I desperately want to take Dad home, but I realize that without any answers that isn’t going to happen. 

Noon comes and goes. One o’clock comes and with it the arrival of my brother. Thank goodness. I don’t have to bear this burden alone. Not ten minutes later the oncologist walks briskly in. He introduces himself and we talk. He says Dad is not strong enough to withstand treatment. He says without treatment Dad only has at most a week to live. We are stunned. This is the answer. This is why Dad isn’t waking up. We talk a bit more, he says he is so sorry and he leaves. I ask my brother if it’s ironic that the cancer doctor is bald. Then we both look at Dad and lean into my brother’s strong shoulder and ask him bitterly “when did it become just US?” We were always such a strong family unit of four. But that strength, passed on to us by our parents, is what will see us through this. We are still a team. We are still Bullworker’s children and that is no feat for the weak. We talk quietly and make the hard choice. Dad will come home, on hospice care.

The rest of the day passes in a blur as we arrange to take Dad home. When we finally get him there and the ENT’s are transferring him to the new hospice arranged bed (the home health one sits forlornly off to the side of the living room), Dad wakes up. His eyes are open. He is looking around intently. He stares for a while at the pictures on the wall. He sees me, he sees David. He is home and he knows it. I believe this gave him a great deal of peace. I do not know if he knew he was dying. His last twenty four hours are just for me and my brother to remember. I won’t write about them. But he knew he was home and that we were all with him. We didn’t know it would only be 24 hours. 

I am comforted now by the fact that I believe he is in Heaven, waiting for my mom. He’ll have it all sussed out and be there to welcome her when it’s her turn. He would have wanted it that way.

I love you Dad. I miss you like crazy. I’ll take good care of Mom for you, don’t worry.