Julie Tullos

It’s a Sunday night and I’m in the bath. Her bathtub, in her room – in the house she lived in for only a year. Still, it has her essence – her clothes I can see in the closet, her bathrobe hanging from the hook by the tub, her shampoos and conditioner to turn frizzy hair straight. I use the last of the bottle of bubble bath – her favorite scents, vanilla and patchouli fill the room. I breathe in. I try to relax, I try to calm my troubled heart and head. After I get out of the bath I go in her closet and try to imagine her there, choosing her own clothes, her own shoes. I try to remember when she’d be in the bathroom with her coffee putting her makeup on and getting dressed, in the old house. When the doors were shut and she didn’t want anyone to interrupt her, much less help her.

Don’t think about the fact that she started to wear the same clothes day in and day out. That she stopped wearing pajamas. That she would put three or four shirts on one on top of the other. Don’t agonize over when you had to pack up some of her clothes and had to throw away so many of her pants and underwear due to stains. She was so proud. She would not want you to remember that. She would be mortified if she knew you had noticed. Don’t dwell on how you looked at the bras in the drawer and dismissed them. She wouldn’t wear them anyway. You considered the socks and decided against – just another slip and fall waiting to happen. Bare feet or shoes are best. She was never a fan of socks anyway.

I look at all the things in her bedroom and bathroom. These were her things. The stuff she picked out for her own and enjoyed. The ornamental birds, the tiny doll bench at the end of her bed, the yellow rose antiques she inherited from her mother. I can’t stand thinking that she will never see these things again. And if I took them to the place she’s at – I can’t call it her home – would she remember them? Would she look at them vaguely and say oh how nice! Or would she say oh! Yes, I remember this. I loved this.

When they call me through video conferencing, she is so happy to see me. But even so she can hardly figure out how to hold the phone so that I can see her face. A lot of times she puts her thumb over the picture, as if she is stroking it. As if she would stroke my hand if I were with her.

Because of COVID-19, I haven’t seen my mom in person in over two months. I haven’t held her hand or hugged her. She seems happy enough most of the time. A week or so ago she fell in her room and had to be sent out to the ER because she had split her lip and hit her head. I knew she would be terrified. The lovely ER nurse that answered the phone when I called told me “I know how hard this is for you. My story is different, but I have a story, too.” The ENT’s had made her aware that my mom has Alzheimer’s. I didn’t need to panic. She let me talk to my mom on the phone – twice. She got her a coke to drink when I told her it was her favorite thing. She thanked me for telling her. She kept my mom close to her and I am SO GRATEFUL. It seems so rare to come across such kindness, but I believe that one thing COVID-19 has done is to make us ALL more grateful to and for the nurses and doctors taking care of our loved ones. They may not have the same story, but they know your story is so personal and important to you. This nurse didn’t try to dismiss my feelings, she helped me process them. How many nurses do you know that have ever done that for you, in such a heartfelt, caring way? Her name was Gerri. I am exceedingly grateful that she was the one that was there, in that place, at that time.

Mom’s cut is healing, she no longer has a vivid red mark across her upper lip. She has a friend, John, that she was sitting with today and having a “wonderful time.” Those were her words. She could not tell me what she was actually doing, but the fact that she was enjoying herself was balm on my troubled soul. I miss her. They were having holiday cookies and just talking I was told by the Activities Director. The best caregiver I’ve known there, Seema, immediately took over taking care of my mom’s precious cat when I was no longer allowed in. I didn’t have to ask or worry about it. People step up, you know. People go above and beyond their call of duty. God has sent angels to watch over my mom while I can’t be there. Today was a dark day for me, for more reasons than my mom’s situation. But at my lowest point, when my heart was weeping, that call came through and I was able to see my mom’s smiling face. I can no longer tell her that I am upset, that I miss her, that I need her to comfort me. I don’t want to cause her anxiety so I don’t tell her about my colt that died, I don’t tell her that I often feel impotent as a parent. I don’t spill my rage and hurt onto her shoulders anymore. I don’t tell her that I never thought I’d have to raise my child alone, without her, and that it sucks.

Nobody listens like your mom listens. So I think I will tell her. I’ll go down past the pond and choose a paddock, choose a pony, and I’ll vent and weep and rage. And I’ll listen. I’ll listen to what she would have said, when she was able. I’ll feel her close by and I’ll be comforted by her touch that whispers like pony whiskers on my arm. And in the horse’s soft nicker and gentle nuzzle I’ll know who is listening.

I’m pretty sure she’ll be there.

 

I’ve been crying for three days. Crying, ranting, raging – unable to handle one more thing. Losing it with Baby Girl, losing it in general. Tears come unbidden, at any random time. I curl up in my bed and let it go for a little while. I write bitter, venting words that I share with my husband and a few friends. I cry so hard I can’t breathe. I scream at the Devil and he laughs.

And then. There’s a little sliver of light. From nowhere it comes and I welcome it. I grab it with both hands and I hang on. It came while I slept. It came somehow, without me doing anything to ask for it. It came and I saw it.

Life right now is so uncertain, so unbearable and shitty. But bear it we must. There is no other choice. And I must be the one to be strong. For Baby Girl, for my Dad, for my Mom, for me. You’ve heard it before but I’m telling you right now that when the Devil told me I couldn’t withstand the storm I almost believed him. I wanted to shake my fist at him and rage “you Mother EFFER – give me back my mom! Give me back my life and my sanity and my confidence!” And then I realized. He’s not the one.

I have never in my life given up on anything. Not when things were as bad as I thought they could possibly get, not when I lost the first baby, not when I was told I would lose Baby Girl. I had FAITH I would get through it, I bore my parents’ pain, especially my Dad’s when he cried for Baby Girl. I told him it was going to be OK – instead of him telling me. I laid my head in his lap and I told him it was going to be OK. And it was. God saved Baby Girl – and he saved all of us, too.

And so when I feel like I am not the best mom in the world, when I am downright sure I am the worst – I tell myself God gave me this one for a reason. She was meant to be mine and as hard as it is someday that reason will be clear. Everyday I fight depression so hard it threatens to swallow me and Baby Girl up with it. I fight, I struggle and I lose a lot. Depression is no joke when you’re right in the middle of it. The meme’s and “words of wisdom” that implore you to “choose happiness” – that shit doesn’t fly when you have severe depression. If I was in any way capable,  I would certainly choose happiness. Wouldn’t we all?

I see happiness in that sliver of light. I can’t quite grasp it but I’m going to try. There will be more days when I can’t handle a single thing, when I yell at Baby Girl for no reason – there will be days when I am tested so hard I want to crumble. And maybe I will. For a little while.

But then, I’ll see that sliver of light – that hope and happiness and goodness – and I’ll stand up from my knees and I’ll say with strength from God “I AM THE STORM.” And the Devil better be listening cuz I’m only going to say it once. I’ll shake off his doubt and despair and I’ll cloak myself in faith. I’ll be strong again. I’ll be ME again.

 

I feel like she’s been locked away. Like they used to lock away people in institutions for mental or emotional or physical handicaps. She seems so remote from me, and from everything she should be doing and experiencing right now. There is a depth of anger in me so deep – so deep that I might drown in it. I never knew it was possible to feel anger so deeply within my soul.

The reality is she is NOT locked away. She is where she needs to be for her own health and safety. But reality doesn’t mesh with my feelings about it. The fact is – I cannot take care of her. I was not trained for that. I cannot maintain any semblance of a “normal” relationship with her if I am cleaning her up after an accident or constantly re-directing her actions or helping her eat with a fork. My heart breaks enough just being with her and not being able to hold a conversation.

They call me, they do. At night when she’s so upset that she can’t breathe. I talk her down off the ledge time and time again. I tell her she’s loved – so much – and I tell her everything is alright and then I tell her stories about her granddaughter and the horses and whatever else I can think of that will make her heart smile. I wait on the phone while she takes her medicine she was refusing earlier. I wait until she can breathe again, I tell her I’m drinking wine and that she should be too. She laughs and says “that sounds good!” I make it a point to bring her a few beers the next time I come to see her. I tell the caregivers to be sure to open it and serve it to her over ice – she can’t do it herself.

They call me during the day with video conferencing. I am desperate not to miss these calls. I wish they were more consistent but I understand that they are busy and doing their  best. I’m glad to see her face, if even for just a few moments. I’m glad to hear her voice. She still sounds the same as ever. I have an old voice mail she left for me a few years ago and the entire reason I have not gotten a new phone is that I don’t want to lose that voice mail.

She should be here. Enjoying this beautiful sunny day. Gardening, or cooking something new to try. She should be playing with Baby Girl and laughing and rolling her eyes with me at her sassiness. She should be sitting on the back porch and watching the squirrels and birds and appreciating life. She should be there when I go to see Dad. She isn’t.

Would it have been easier if she had died from cancer or such? From an accident? Something quick? I don’t know if it would have been because that isn’t the way it’s happening. Instead Grief hangs over us all, unrelenting because in a way it hasn’t really started yet. We are all just holding on. Waiting for the inevitable. For a future where we have to learn to live without her entirely. A future where Baby Girl gets married or has babies without her Grandma to witness it. Where she graduates high school or wins a champion ribbon in a horseshow. Maybe joins the swim team. There is no telling what Baby Girl will do – but it is absolute that her Granny won’t be here to bear witness to it.

That is what makes me the most sad of all. I know we can’t go back. Back to swinging in the hammock in the back yard in Tyler, chilling out drinking a beverage and shooting the breeze with Dad while Mom makes my favorite meal. Sitting at her table with her in the evening discussing everything from books we are reading to the mysteries of life. We can’t go back to the every day phone calls and the advice and love she gave me every day. It’s the future that we will miss most of all.

She’s not locked away, this I know. She’s safe, she’s healthy and I’ve got to believe the people there really care about her wellbeing. All the same, she’s “locked away” from my everyday life. And I find that impossible to bear. Sometimes I take my anger out on my husband, sometimes on Baby Girl. I try so hard not to – I know it isn’t fair. My husband understands. Baby Girl doesn’t – so I sigh and try to calm down and reevaluate the situation so that I can be fair with her. I hope someday she’ll understand that it was very difficult to have a Mommy with a constantly broken heart. I hope she’ll forgive me.

And I don’t want you to worry Mom. In all the important ways – I’m holding on tight to you.

Baby Girl is in her element. She doesn’t have to get dressed. She can play all day and eat all day and make a huge mess all day. She can go outside when the weather is nice and ride her pony. She is free to be her very best self. Well, at least her truest self. Which is not always her best self. In fact it very rarely is. The kid knows how to push my buttons and that’s a fact. She’s smart. She thinks she knows everything. She will tell you she does – she will scream it into your face. She will argue every point you try and make.

Occasionally she’ll tell me “you’re right Mommy! You’re right and I was wrong.” Like it is completely inconceivable that this could occur. She is in wondrous rapture when this happens. Meanwhile I’m looking at her like she has two heads and has grown wings.

Baby Girl is spunky. She has spark. She has a ferocious temper. She will, God willing, grow up to be a force to be reckoned with – in a good way I pray. She hears conversations I have with Tony from three rooms away. She remembers everything. She especially remembers if I am having a “day” and get frustrated with her and say something like “I just wanted to have a nice day with you and now look.” She’ll say it back to me if she’s the one that gets frustrated. But unlike ME, she’ll say it over and over while wailing and pounding her fists in her pillow and punishing me as forcefully as she can with her crocodile tears.

And if you think to yourself “what in Hell’s teeth do I do now?” as I often do, you might also think well maybe I should try talking to her. Big mistake. Huge. DON’T DO THIS. It’ll just unleash another wave of fury and sobs. Walk away, just walk away. She’ll come around. Have a drink. Have another. Be patient.

If the kid is anything like me (and we all know that she is) she’s continuously trying to figure out how she feels about things. She’s not about to give in, and she’s not going to give up. And she’s got almost 39 years on me. So I worry. And I’m weary. All these crazy changes lately and these scary things going on have me like “Lord just let it all be over. Let it all go back to normal.” But normal, at least for me, wasn’t that great either. Right now I’m saving time and gas by not being able to drive to visit my parents but that is simply replaced by extra worry because I cannot see them. For people whose parents do not have medical issues this may not be a big deal – for me it is crucifying. My mom can’t even have a decent conversation with me so all I can do is have five minutes with her by video chat whenever I don’t miss that call. I know that every day is one day closer to her not remembering who I am. And I’m missing this crucial time with her. And while I’m super angry and sad about this I am also not willing to risk her health and the health of the others around her. She wouldn’t survive Corona – I know this. The facility is on lockdown and no one except staff and medical personnel are allowed in but this certainly doesn’t guarantee that the virus will not be brought in somehow. And here’s the worst possible thing – if she does get it and is admitted to the hospital I won’t be allowed to see her there either. I can’t even begin to image my mom in a hospital, confused and sick, and I’m not allowed to be by her side. The worry is overwhelming.

And my Dad. My Dad is already in a hospital. Having had three (four?) surgeries in the past week alone. His new doctor is amazing, I know this even though I have never met him, because he saved his leg. It was weeks, maybe days, away from having to be amputated. Bullworker has a bit of a following on Facebook and I am grateful to all of you that have posted words of comfort and support. I know he reads them. I am not allowed to visit him there, and I will not be allowed into the rehab place either. However, I am hoping against hope that I will be able to transfer him from hospital to rehab thus getting to spend some time with him, if even just for as short a time as that. I imagine that the rehab place will take good care of him, but again, the coronavirus is an ever-ominous threat and I am worried. My aunt has taken up residence in his hospital room, after refusing to leave once she brought him in, and thus she is now trapped. If she left for any reason they would not let her back in. I am exceedingly grateful to her. She is a Thomas, after all, and persistence and damn cussedness runs in the family.

So, Baby Girl has the run of the house and the property (and me) because I currently cannot focus on anything else other than the worry surrounding my parents. I want to work, but the rain and cold has stopped me short. Plus the persistent pain in my foot which makes me want to scream with annoyance. Riding and Crossfit – my two go-to’s for ME TIME both make my foot hurt worse.

This is just a season right? This too shall pass. But lately every time something passes, something new and worse takes its place. My dryer went out yesterday. Just because it could. My phone won’t hold a charge anymore. My kid has got my number and I’m too weary to do anything about it. So if you’re having a hard time too I totally feel your pain. I’ll have a drink for you and I’ll pray for you as I have been praying for myself. I know I’m not alone though it sure feels like it when we must be socially distant. I’m pretty good at social distancing but it’s always been of my own volition not the government’s. So that of course just pisses me off. Baby Girl and I don’t like anyone telling us what to do. I would laugh if I wasn’t already crying….

Breathe deep my friends. This too shall pass. The future may not be any brighter but the hope that it will be is what keeps us going.

**Disclaimer** If you are offended by cuss words I’d advise you to stop reading now.

A few weeks ago I noticed Baby Girl scratching her head. So I did what any mom would do and I ignored it. Just kidding, I really looked at her head. I searched and searched and didn’t see anything. So I moved on. Chalked it up to the continuous weather changes and dry scalp.

A week later Baby Girl got her hair cut. Deep conditioned and three inches shorter – she didn’t seem to be itching anymore. The hair stylist didn’t mention seeing anything odd. I even told her that Baby Girl had been itching and she concurred that it must be dry scalp! So we moved on.

A week after that – last Sunday – we are at my friend’s new house in a sleepy little town called Pelican Bay. Baby Girl and her friend are sitting on the floor playing and I’m standing above her. I look down and I’m like “what the FUCK is that? Friend!!!! Are these fleas?!” She looks. They are so big and so many that I can easily pluck one from her hair. Um. No. OH HOLY SHIT IT’S LICE. My whole world stops moving. I panic. I throw up a little in my mouth. I toss Baby Girl in the car and my wheels screech as I spin out of the driveway.

AND I IMMEDIATELY GET PULLED OVER. By the Pelican Bay policeman who must be the only one on duty and must be bored out of his mind. I’m like WHY?!?! Why dude why? I have got to get this kid home and burn my house down! I’ve got heads to shave! WHY did you pull me over?

Ma’am you didn’t use your blinker coming out of the subdivision.

(By the way I was turning RIGHT. Not left). ARE YOU FUCKING KIDDING ME. So of course I tell him my husband is a police officer. And he says oh really? And comes back with just a verbal warning that I need to be more careful. I seethe. I make a big point of using my fucking blinker as I merge back onto the road.

I have, of course, frantically called Tony during this exchange and tell him that A) baby girl has lice and B) I got pulled over. He is way more concerned about the lice (as he should be I suppose). We quickly ascertain that we have some products in the house we can use. We HAVE done this before, unbelieveably when Baby Girl was 18 months? Two years? She somehow got lice even though she literally never left the house unless she was with me at that point. But her hair, though amazingly thick for a two year old, was much much shorter and easier to deal with at that point. I mean, have you guys SEEN Baby Girl’s hair? It’s been like adult hair since she was born. I never even used baby shampoo on it. We had to condition it from about six months old on. It is the thickest, most luxiourius mane you’ve seen this side of an African lion. She’s very very blessed with her hair.

I’m screwed. How in the hell am I going to get a comb through that mess?! And let me assure y’all that her head was CRAWLING with lice. Not just a few. So while I’m speeding like mad to get home – Tony is at home with a blow torch. Seriously – he wouldn’t do that even though I was thisclose to telling him to. But he WAS washing, on high heat, everything in the house. Every blanket, every jacket, comforter, sheet, pillowcase and stuffed animal he could find. We vacummed and shampooed the carpets. We did her hair with the lice killing shampoo and the comb. We used tea tree oil. We did my own hair. We did Tony’s hair.

I bet you are scratching your head right now, am I right? I am.

I tell her teacher she has lice. I didn’t know this but last year the law changed and now kids can attend school whilst having lice in their hair. WHICH IS WHY BABY GIRL HAS IT. WHICH IS WHY WE WILL PROBABLY NEVER COMPLETELY GET RID OF IT. Nobody’s safe. Did I send Baby Girl to school then? You bet I did. To be fair we DID treat her hair before she went. Also to be fair, she’d already been for weeks before we even knew she had it.

Kindergartners are the sweetest lil things ever. You walk in and they all run to hug you. They don’t even know who you are or why you are there. So I can’t imagine how on earth you can keep lice out of a kindergarten classroom. Even if you bug-bombed it every single night. They share hats, and hair bands, and they keep their heads close together over coloring pages and books. They sprawl out on reading carpets and sink into shared bean bags. I mean we are fighting a losing battle here.

I have now treated Baby Girl’s hair three times and tonight will be the fourth. I’ve treated my own hair three times and literally cut six inches off to make it easier on myself. I am pretty sure our house is lice free. Pretty sure. If I see another one I am going to just burn the place down, I swear. I have been in a RAGE all week. I am one tired Mother.

If you see me this week take pity on me and tell me you like my haircut. Tell me life is actually worth living even with lice in it. Bring me wine and chocolate. But for God’s sake don’t hug me.

We never know which tiny piece of snow holds back the avalanche. We don’t know until that one piece finally shifts, or lets go, and then everything rushes down. I’ve been searching for my own Atlas, and I haven’t found it yet. Today was just one more tiny piece of what I hope is the crumbling pie.

Atlas holds the weight of the world on his shoulders and this is how I feel everyday. But more than just feeling responsible for everyone and everything around me, is the shame and disgust I feel about my own self. That may sound harsh but it’s true – so true. Five years ago I was about 40 pounds lighter and a half a world away from F*A*T. Ten years ago I was 50 pounds lighter and strong – and happy. Stressed out of course – because if horses are your life you are ALWAYS stressed – but happy nonetheless.

When you are five foot two fifty/forty pounds is a LOT. So what happened? I couldn’t even tell you. Getting older? Sure. Hormones changing? Sure? Depression? Probably. But I honestly think that not being able to live life MY WAY all the time was the kicker. It’s easy to blame having a child for your body to change – but having a child also changed the entire way I view my world. As it should, right? The kid becomes your universe. But somewhere in the last five years I lost myself.

It started with less riding, and then pain set in. The pain got worse until it became unbearable to ride. The fear factor was there as well – if I ride I may fall and then I won’t be able to take care of my kid because I will be hurt and it’s also hard to take care of her if I’m in pain. I became less confident. Less confident equals less riding. I remember just a few months after Baby Girl was born I was riding a large pony and for some unknown reason that pony decided I was trying to ask for a lead change (I was not) and he did not agree that a lead change was in the plan. So he bucked me off. And I was surprised as I landed on my back in the dirt, surprised that he got me. And it shook me. The pain was intense. My baby was only two months old.

Along with less riding and more pain comes more responsibility. Who is going to watch Baby Girl if I’m not? Especially in the beginning when my husband was in Haiti. My parents didn’t live close and most of my friends didn’t live close either. It was hard. I used to strap her car seat onto the four wheeler in order to go feed the horses. But she’s always been a demanding child and doing anything while watching her was damn near impossible. So I stopped cleaning the barn, fixing jumps, and taking care of the paddocks, except for what was absolutely necessary.

I was tired. I took a lot of naps. Depression set in and all I wanted to do was sleep. I still take a lot of naps – it’s an escape. The only time I do not have to be responsible for anything. And then came my aging parents – who are not to blame of course, but as their daughter I am one-half of all they have and they are my responsiblity as well. We’ve always been a close-knit family and I’m certainly not going to let them down.

I’ve been trying for years to lose weight – even as I watch it creep higher and higher still. I worry about sugar, and diabetes, and depression (sugar blocks seratonin after all) and I worry about heart disease and most of all, about Dementia. I think that the healthier I get the more likely I am to avoid Alzheimer’s. I have read book after book about healthy eating. I have made a lot of small changes. I joined CrossFit. I push myself. But I’m still tired. Still overweight. Still hate the way I look in the mirror. When push comes to shove and I get stressed I turn to sugar and carbs every time. It’s easy.

I hate to cook. I prefer things that are ready made. I don’t want to peel vegetables and figure out what to do with them to make them edible. I did cut out most fried food awhile back – acid reflux made that decision easy. Dr. Pepper and Diet Coke are way more satisfying than water. I’m only counting down the hours til it’s time to drink wine anyway. I do drink water – just not enough. I eat all the right things – just not enough. I go to work out – just not enough. I’ve cut back on the sugar – just not enough.

What will it take? Where is my Atlas? I need that avalanche to fall – I need to lose weight and not hate the way I look, I want to look sexier and younger and I want to FEEL LIKE A BAD ASS. I want to wear the clothes I already own and not fill them out so well and so much. I want to fit in jeans I haven’t worn in years. And I want to be a bad ass Mama. These kids that look at their mama’s in the gym while they’re lifting 200 plus in a clean – I want to be one of those mom’s.

I know I can do it. Maybe the wine is my Atlas….

My brother and I just spent our very first family Christmas together, alone, without our parents. It’s something I wasn’t prepared for. With mom in memory care and Dad in the hospital it was just us and our four children. I made the kids wait until my husband woke up on Sunday morning before we could open presents. It just felt too weird not to have another adult there. Like some sort of bizarre plot twist in a time travel movie.

Overall we had a good time. We did go visit my parents and the kids opened gifts from them that Grandpa paid for but never saw. Dave ordered them and I wrapped them and the kids gleefully tore into them, unaware and unconcerned of what emotional price I was paying. We went to Babe’s chicken one night and ordered pizza the next. No traditional Christmas dinner was planned nor cooked. No cookies were baked and no pies were devoured. My nephew watched How the Grinch Stole Christmas four times. I’ve had “wa hoo wa hoo wa hoo wa hoo something something Christmas day” stuck in my head ever since.

The two girl cousins had a great time until there was a misunderstanding over a stuffed unicorn and both girls were in tears and tired of each other. I was done drinking and ready for bed before my brother was, which we were probably both disappointed by but there’s only so much I can handle before I need to escape. I’m still recovering.

Today is Christmas Eve. Tony and Baby Girl and I went to see my mom and took her gifts for Christmas. Her room at the memory care center is always fairly destroyed when I arrive. She spends her time moving her possessions around, packing them up and stuffing them in bags and cabinets. She is clearly confused by her surroundings at the best of times. I tried to decorate her apartment with all the things she loves best: pictures of her and Dad, pictures of me and David and all her grandchildren, things my dad made for her and things that belonged to her mother. My grandmother loved yellow roses, yellow roses were all over her house, especially on these fancy plates. There are big plates and small plates, gold rimmed plates and plates that should be hung up and plates that sit on fancy holders. There are cups and saucers, too. They’re all beautiful and they’re all extremely old. And precious to my mom.  Oddly, I feel absolutely no nostalgia for these things except for the fact that I know my mom loves them.

Today I found a broken saucer. Did she drop it? It’s split clean in half. She had shoved it back in a cabinet and I found it there and sadly pulled it out. Oh no! I cried to Tony, look! I was devastated. Mom couldn’t tell me how it happened. She told me not to worry about it, she seemed very unconcerned. And as she was sitting there WITH BABY GIRL NEXT TO HER, she asked where is Baby Girl? I looked at Tony and he looked at me and neither of us said anything at all. She opened one of her gifts, a shirt, from me and told me she loved it. Later, when we were getting ready to go she said “oh I don’t need that thing.” Referring to the same shirt.

We took her to Whataburger for lunch. She was overjoyed and kept repeating “this is just incredible” and “you are so sweet to do this for me.” But at the same time she was very worried about being in the truck and absolutely unsure what was going on at any time. When I took her into the restroom I noticed that once again there was a wet spot on the back of her pants. She also told me that the place smelled but I am pretty sure it’s just that she gets STUFF under her fingernails. STUFF that I don’t want to spell out. Because she can’t remember to use toilet paper and gets confused in the bathroom. THIS is why she’s in memory care, this more than anything else. It just guts me to realize that it will still happen, even with the best of care. You can’t tell her, either. She’d be extremely embarrassed and she wouldn’t let you help her wash her hands. So there’s no point but to just endure the outing and get her back to her apartment as soon as possible and hope that someone there notices and does something about it.

Like the saucer, I am broken. I can’t enjoy this season. I am sad and angry and not yet ready to relax about it all. I wish my Dad was at home, I am not sure if that would have made any difference but it would have been nice to have him with us at our Christmas celebration. The thing that tears me up most, about the broken saucer, is that Mom wasn’t concerned about it. What was once precious to her has been forgotten.

Sometime, in the not so distant future, my brother and I and our children will all be just like that broken saucer.

We’ve been looking at memory care facilities this week. Dad and I checked out two on Monday here in Denton and Wednesday I went and looked at two more in Frisco. Two of the four places have been chucked out of the running already. I have two more that I haven’t seen yet.

People say “oh you’ll know when the time is right to move your mom.” I call Bullshit. It’s never going to be the right time. She loves my Dad and she is comfortable at home. She knows us all by name still. How do you broach the subject of moving into a whole other place? Sure, she can bring her cat (a pet friendly place is non-negotiable) and we will furnish the room with stuff from her own life, her own things. But still, she will not be with Dad every day. How will she handle the transition? Will she feel like we are being terribly mean and shunting her away? Will she even know the difference? Will she get used to a new place? Will she enjoy being cared for so completely? Having new people around her, and new things to occupy her time? Will she blossom with the attention? Or will she go downhill again? It’s impossible to know. Her brain is dying but the rest of her is doing fine. How long until she loses what is left? There are too many questions and not enough answers.

I bet you can’t imagine how much a memory care facility costs per month. How do people cope that do not have any savings? I can’t even fathom putting her in a place that is “less” than these private care and private pay places we are considering. One of them was $6600 a month! And that wasn’t even the nicest place. They also were offering a “special” of $4500 a month – lock that rate in for two years! Well hell let me run home and say “HURRY UP MA we gotta take advantage of the move-in special! Grab your things and let’s go!”  What total crap. This is the same place where the Director took me into a room that was locked in order to show me yet another gathering place that looked like all the others. The reason the room was locked was because this lovely young lady was doing music therapy with a very old resident. The Director proceeded to tell me very loudly – over the music – what the room was used for. The guitar playing music therapist kept stealing glances at the Director. I’m sure they appreciated the intrusion.

I wonder what my mom went through when she was having to move my Granny from her house in Austin to an assisted living place in Tyler. She started out in a little house in an assisted living community, then had to move to an actual assisted living building before finally being moved to a nursing home. There may have been another move in there. I wish I had paid more attention. I especially wish I had paid attention to how my mom handled telling Granny about each move. Granny did not have Alzheimer’s – she had a type of dementia called Lewey-Body syndrome. Different, more entertaining certainly because Lewey-Body makes you hallucinate. Granny also did not have my grandfather. He passed away long before I was born. Did that make it easier? Granny was used to living alone, the only person she had to depend on in the end was my mom. My mom did not have the best relationship with her mom growing up. Was there a disconnect there at all? I do know how hard it hit her when she missed being with Granny by ten minutes when she died. I can still hear her voice on the phone when she called me shortly after. I know how my mom suffered over her death.

I pray every day about this situation. I pray for my mom of course, but I also pray that I will not get Alzheimer’s. The odds are stacked against me but I’ll fight it. God knows I won’t ignore the signs and symptoms if and when they come. I pray that Baby Girl will not agonize for one minute over what to do with me. I will do everything I can to make advanced directives regarding my care. If nothing else this process has taught me to be prepared, to think ahead and to definitely not ignore my health. I pray for peace for my mom and for my dad. In the end I hope that Baby Girl does not have to deal with this same situation but if she does, I hope that she knows that I want her to live her best life. Surround me with my stuff, my books and my pictures and my bottles of wine and I’ll be just fine.

I should’ve seen it coming. Anytime there’s a horseshow coming up, or a weekend that is going to be very busy – it rains. Baby Girl gets sick. Something happens that requires emergency attention. My whole weekend shot to hell.

I am bleary eyed. At 5:45 am I was informed that someone was too sick to go to school today. “You want to hear my bad cough Mommy?” Kid, I’ve heard it. I’ve heard it all night. And for pete’s sake go back to sleep – it’s Saturday. “Noooo” she whines “I want to get uuuuupppp!” And because I know it won’t stop until I do, I get up. Get her settled watching a movie. Can’t go back in my bedroom because Tony is asleep from working the night shift and it’s not like Baby Girl is going to let me sleep anyway. The dog is whining. Have to call Dad to tell him to get his medicine out at 6 am. Have to call him again at 7 to be sure he’s doing it. Was supposed to sleep there last night but didn’t want to expose him to Baby Girl’s germs.

It’s 7:55 and I’ve already fed the horses, given the cat endless treats, ripped at least five things out of the dog’s mouth that she’s not supposed to be chewing on, started the laundry, gotten the Princess Tylenol that she won’t take – she has a 101.6 fever – and taken stock of my wreck of a house. I’ve already had one Diet Coke and am working on a Dr. Pepper. The horses have been in for three days and I’m going to have to turn them all out in the mud later. I need to do invoices and the lesson schedule for November. HOW is it already November?!

My brother is coming from Austin today to discuss with me and Dad what our future options are for my Mom. Super fun conversation. Can’t wait. Tony will get to escape at 3:30 and go back to work while I *possibly* help the kids get ready for the horseshow tomorrow – I haven’t heard that it’s been canceled and it probably won’t be canceled until the horses are all back in the stalls bathed and prepped and the tack is all clean. I won’t be able to teach in my arena for at least three consecutive sunny days and it’s going to rain again on Tuesday.

Annnnnddddd Dad just called and informed me he needs to go back to the ER. Something not right with the wound from his surgery. A hard ball that is getting bigger and is very painful, which the doctor dismissed yesterday at the appointment. I have not been impressed with this doctor. He JUST got the wound vac off yesterday.

Is there a plus side? I can’t think of one at the moment. I want to wring my hands in despair and lay my head in the cradle of my arms and start drinking RIGHT NOW. I want to FIX everything and it’s all out of my hands.

Is God trying to tell me something here? Don’t sweat the small stuff? Enjoy the teeny tiny positives in life? Don’t strangle the dog for chewing up your boots or the cats when they won’t stop walking back and forth over your keyboard? They are still God’s creatures after all. God, if there was ever a time I needed you, my family needed you, to not only walk beside us, but CARRY us – it’s now. Please let the footprints in the sand be yours. Please give us inspiration and strength and wisdom and faith.

Also, please bring me a house cleaning fairy and a wine membership.

 

When shit hits the fan, when stress has you wallowing in self pity, when it’s all you can do to keep breathing – what do you turn to to help you cope?

September 16th my Dad went in for a vascular surgery. He was nervous, I was nervous. He’s the provider for my mom, who has dementia, and organizing everything so that he could get this surgery done was no mean feat. Mom cannot be left alone anymore so between myself, my brother, my husband, Mom’s caregiver and my good friend Kathy we managed to be in all places at all times for everyone, Baby Girl and the horses included, while Dad was in the hospital and then for the first few days he was home. All was well.

Fast forward two weeks. Dad tells me he’s not feeling great. He has a fever, and chills and is throwing up. I think Flu. The next morning I come over to see him and I am shocked at how he looks. Gray. Like death has set up camp a few streets over. I see in his eyes, this is not something minor. I take him to the ER right away. Once we get in the back, the people start swarming around him. I sit back and think to myself “Shit. This is not how it was when Mom came in. This is a bit concerning. Why are there so many people?” They are putting two IV’s in – one in each arm. They are using an ultrasound machine to do it. They are taking blood and administering fluids and nobody is talking to me. Finally one of the nurses (I think) tells me they are treating him as if he is septic. He is nonchalant about this so I don’t really think much of it. We start getting results in – no pneumonia. Lungs are clear. For a man who has smoked a pack a day for 65 years this in itself is pretty amazing. Next – no flu. Well I guess it’s an infection from the surgery then? It doesn’t look too bad they tell me. Dad tries to tell them it hasn’t been right since the surgery. Never stopped weeping, doesn’t want to heal. They nod sagely. We need him to give a urine sample they say.

We wait. Five hours later they admit him. I can’t stay – Dad is alone in the hospital because I have to leave to be with my mom when her caregiver leaves for the day. At this point I don’t really realize how close he was – how dangerous his symptoms were. Nobody tells me anything. I get one phone call from a case worker who tells me what room they are moving him to. I get no further results – no information about what is wrong with him. Dad is in no condition to text or call. Everything is eerily silent.

The next day after the caregiver arrives for Mom, and getting Baby Girl to school, horses fed, I finally make it to the hospital. He is bitching non-stop about how bad his neck hurts so I know he is feeling better. Over the next few days his discharge date keeps getting moved back and nobody ever bothers to fill me in on a diagnosis. I beg my brother to come – I need him to be with Dad. When he arrives he makes heads roll until he gets some answers. Finally a diagnosis. A staph infection and septicemia. What? I google it. BLOOD POISONING. From the staph infection. From the original surgery, though no one will admit that.

My Dad waited a very long time to have this surgery. Which was supposed to help with blood circulation in his left leg. This is what he got for his trouble. A near-death experience with a bacteria called Staph. Even now, weeks later, he is home and still very sick. He is on antibiotics which must be administered by IV through a PIC line every eight hours. Guess who gets to administer the late at night one? Yours truly. Baby Girl and I are having a never ending sleepover at my parents house. (Which I am SO OVER by the way).

Like I said, Dad has been smoking for 65 years. He is 73 years old. That’s a lot of cigarettes. A lot of nicotine. A lot of reason for his veins to shut down. A lot of time to try and quit, and never succeeding.

Since he got home from the hospital he has noticed that every evening around 6:30 he starts feeling really, really bad and is short of breath. Tonight he said “I think I figured it out. The wine, I think it is the wine.” Dad likes a glass of wine every night – he enjoys it immensely. I say well Dad why don’t you try not having it tomorrow and see if you don’t feel this way? And he answers – I love that wine. I look forward to it every day. And I point out that he’s on a lot of medication and that if it IS the wine, then hopefully after he’s done with all this medicine that he could go right back to drinking it every night. He shakes his head sorrowfully.

I understand. When life hands you lemons you drink lemonade right? It’s why I can’t give up the sugar I love. Why Dad wants that wine and those cigarettes. Why we do things we KNOW are detrimental to our health. It’s not because we aren’t strong enough to quit. We are very strong people. We are stubborn and persistant and we can do ANYTHING we want to do. We have proved that over and over. But. When everything else is beyond our control and all we have left is the urge to self-sabotage, well. We do. Because it feels good in the moment. Because it’s the one thing that lets us escape for even just half a minute. And mostly, because we are so exhausted from caring for everyone else, how can we deny ourselves the one thing that feels so good?

I get it Dad. And as much as I want you to quit smoking entirely, I totally feel where you are coming from. If only eating raw green beans would have the same effect….