Julie Tullos

I believe that a person’s heart is made up of a lot of different compartments. New compartments get added while old ones wither away or are filled with a new person’s love. We have as many compartments as we need for all the different loves in our lives. Sometimes there will be a compartment filled with the love for one person, alone. And sometimes that person goes away and that piece of your heart gets permanently broken. And sometimes a compartment that is filled to bursting with love for someone doesn’t get broken but maybe bruised, or maybe it’s so full that you don’t even know how to handle it. This is what it’s like when you have a child. When Baby Girl was born I looked down at her newborn self sleeping and l literally felt that new, strong piece of my heart just fill up and up and up until it took my breath away. This is what it is to love something so completely that you think it might kill you.

Baby Girl has turned into a very, very, SASSY six year old. She doesn’t have the best of respect for her elders. She can’t hear you when you tell her to do things (apparently). She likes to argue. Incessantly. And whine. And beg. And cry. There are many, many wonderful, lovely things about her but I can’t remember most of them right now.

Right now, at this very moment, she has been happily (my happiness) given over to her Daddy’s care for a few days while he visits relatives in Arkansas. Because this Momma is completely done. I am done with the screaming, the crying, the arguing, the talking over me, the ignoring my requests and everything, oh everything else. The not going to sleep, the not getting out of the tub, the not doing her homework…. all the NOT’s.

That compartment of my heart that holds my Baby Girl is thoroughly bruised. My ego is bruised. My confidence is bruised. My patience is gone – flew straight out the window last night when she would NOT, NOT, NOT, stop jumping on my bed and go to her own room to sleep. Yesterday morning she ignored the ear doctor when she was speaking to her and the look that doctor gave me was just “what a fucking spoiled child.” I almost cried right there. Instead, I got pissed off when Baby Girl would NOT choose a temporary tattoo between two unicorns (she was sure I would give in and let her have both) and I eventually just ripped both of them out of her hand, gave them to the receptionist and marched her smart little ass rightoutthedoor.

And it’s all my fault. Well, maybe not all, but mostly. I was older when she was born. I didn’t realize that she would be “up my ass” (as my husband puts it) from the day she was born. I did not realize how much I treasure my time at night, to read, to chill, to unwind – until it went away. And of course I did not realize how awfully stressed out I would become because of my parents health problems. I give in, a LOT, too much. I am tired and so I say no and then I say yes. It’s a problem and I know it. Also, the fact that I am an empath and quite literally can feel her pain makes me either a) get angry because I’m tired of feeling so much or b) give in because I hate for her to feel upset and I want both of us to be happy.

I don’t like to cook and I’m tired – did I mention that yet? – so Baby Girl eats pretty much whatever she wants. I do attempt dinner and I attempt to give her a good lunch but there are no boundaries here on what you can eat, or when. Until I try to enforce a boundary that doesn’t exist, then all hell breaks loose. And who can blame her? Twenty minutes ago she was allowed to have a popsicle or a granola bar or an apple whenever she wanted and now, at least for the next hour, she’s not. What a mess. I admit it. I know it. And I want to fix it.

Without the time to stop, think, regroup and plan there was no way anything was going to change. I bought the book “They Are What You Feed Them.” Did I read it? Of course not. I don’t have time. Last night when it was 9 pm and I was sitting in the chair in her room trying to get her to sleep I started crying myself – just sat there and bawled. Naturally Baby Girl doesn’t want to see me cry so she comes down from her bed and tries to comfort  me. But I am beyond being comforted. If she had gone to sleep at 8 pm THAT would have been comforting. I said to her – well mostly just out loud to myself – that I am the worst mom EVER. Not something I should have said to my 6 year old, but heck, maybe she needed to hear it. She started telling me No you’re not mommy!! And I was glad that at least she didn’t think so, even while she walks all over me. And then I told her to just come sleep in my bed because I just didn’t want to sit there and play music all night until she decided she was going to go to sleep. We got in my bed and I promptly passed out.

Then, today, we stopped at QT for a potty break and she’s holding my hand and she makes me bring my head down to her level and she whispers “Mommy, you know how last night you said you’re the worst mommy ever? Well you’re NOT. You’re NOT.” And I said thank you Baby Girl and I gave her a kiss. As sweet as that might be, it won’t actually change anything. I am the only one that can change what is happening here.

Right this minute it is 7 pm and normally I would be fighting with her about bath time and bedtime and knowing that if I don’t get her to sleep quickly she’ll be even more tired and whiny tomorrow (AND her ear infection is back so there’s that crankiness on top) and I also won’t get anytime to chill out before I am so exhausted that all I want to do is sleep. I’d be fighting with her about eating dessert, and doing her ear drops, and brushing her teeth. I’d be internally panicking and wiped out both. And I’d get to the point where I just don’t care – the point where you say WHAT THE FUCK EVER JUST GO TO SLEEP.

Thankfully she is with her Daddy right now and if he lets her stay up til midnight I just don’t care. It is not my problem and he’s welcome to it. I’m chilling. I’m writing. I’m watching House Hunters. I’m drinking wine. I’m remembering what it’s like to have some time alone.

Baby Girl, lately you have had ALL of me, but I’m about to shoot you right back down to your own little compartment in my heart. You have taken over every fiber of my being. You have wound your way like a poison vine over every inch of my skin. I’m cutting it off. That poison is leaving the building. I’m going to save both of us, but I have to start with me. You cannot have all of me, Baby Girl. Not anymore. I love you too much to let us both drown.

Two weeks ago Mom’s hospice worker called me. “Julie. Your mom can’t hold her head up. She isn’t talking.” I’m on my way I tell her. I’ll be there in twenty minutes.

Mom did not have a stroke which is what we all thought at first. When I got there she was in a wheelchair with her head propped up by pillows. She was doing a strange jerking motion with her whole body and didn’t seem to realize I was there. Her eyes kept closing.

We finally all decided that she was just very very sick with chest congestion and so that made her very weak. The doctor was called and he prescribed antibiotics and a steroid. Within a few days Mom was back to her regular self. The jerking stopped with the removal of a certain “calming” medicine she had been on. Such a relief!

But in the midst of the medication changes something else has happened… Mom has become more aware again. I feel like she was possibly being over medicated at the place in Frisco. In many months she had not said she “wanted to go home” or that she “wanted her husband.” She had not been combative very often. She was recognizing dad and me but it was fairly understated most of the time. Occasionally she seemed to not realize who I was.

But since Mom recovered from her illness and the “calming” medication was removed (replaced? I am not sure) Mom has been MUCH more aware. The other night about 7:45 they called me because Mom was feeling worried and anxious. She actually talked to me. She said she just wanted to talk to me because she was a little scared. I told her I missed talking to her at night and I especially missed playing Words with Friends with her. Do you remember playing that game Mom? Yes! She said. I miss it too. I was stunned. We talked a bit more and then she went back to bed. I guess she had been up wandering around when she was usually asleep. She didn’t communicate perfectly but it was so much better than it has been – I just couldn’t believe it. I even texted her caregivers and asked if I was crazy for seeing such a remarkable change!

Today Mom was combative with her favorite caregiver and didn’t want to get out of bed or take her pills. This has happened more often in the last two weeks than it had in the preceding nine months. When I arrived they told her they had a big surprise for her. She had been crying all morning. She comes around the corner and sees me and her face just completely broke down. She grabbed me and hugged me and just cried. My heart shattered in that moment. “I’m here Mom. Everything is ok. I promise.” But that perfect recognition, while extremely painful to watch, is a glimmer of the Mom I knew “before.” And so I’ll take it. I sat with her for awhile and then we went out to get a sonic drink. We drove mostly in silence, just holding hands. Mom starts to eat her hamburger but soon forgets about it and it falls to the floor. I give her one of Baby Girl’s small stuffed ponies to hold. She rubs its fur for a bit then tries to eat its tail. if that doesn’t show you how an Alzheimer’s patient regresses to toddlerhood, I don’t know what would. I gently take it from her and say “can’t eat the pony Mom.”

As I was about to leave I told Mom it’s ok to cry sometimes. And she said thank you in such a small voice. Then I said “it’s ok to cry sometimes but not all day, so pull your shit together Mom.” She laughed so hard. She knows that’s what she would have said to me. We both laughed then and I know she was doing better. I left the little pony with her.

I told her favorite caregiver that I just didn’t know what to do for Mom. That I hate hearing about the bad times but that of course they need to tell me. She said to me “just keep loving her. That’s all you can do. Just keep loving her.”

No worries Mom. As if I could ever stop.

On a Monday morning in September my brother, my husband and I go to the Landing at Watermere, where Mom is, to move her to a new facility. I hadn’t seen her for four weeks. The restrictions while COVID-19 is rampant have made it almost impossible to have any physical interaction with her. She was suffering, I knew. I wasn’t going to wait any longer. When I walk in, Mom is not in her room. I go to the dining area where I see her sitting in a wheelchair near the back of the room, staring off into space. I have my mask on and as I approach I say “Hi Mom.” She looks my way. Nothing registers. I pull my mask down as I get closer and recognition floods her face. “Where have you been?” she softly says. In that moment I am completely gutted. I touch her face – I’m here now mom, I’m here. My eyes fill with tears as she reaches for me. I’m so sorry Mom, I should have been here.

We go back to her room as I explain what is going to happen. Mom, we are moving you to a new place. A place where I will be allowed to come see you whenever I want. A place you will be better cared for. A place where Dad can come and sit with you. I promise it will be so much better. She is ecstatic to see my brother and while she doesn’t fully understand what we are doing, she couldn’t be happier to be surrounded by her family. She watches as we pack up her things. We have her cat, Margaret, in a cage by her feet. Every once in awhile the cat meows and Mom starts to look for her. “Where are you sweetie? Are you ok?” Mom, she’s here, right by your feet – see? In this cage. She is going with us, don’t worry. Mom looks down and acknowledges the cat but soon the information is lost again.

I sit with Mom while the men move the furniture. Her friend Luta comes out of her room next door and I say to her “Hi Luta! Mom is leaving today and we will sure miss you.” Luta answers by saying how easy it is to come out and watch the TV. She sits and watches for a few minutes in the TV room across the hall and then wanders back to her room. I sigh. I can see the decline in Luta, too, and it makes me very sad. I don’t know if Luta sees her family or not. I don’t know if they know the impact that COVID -19 is having on her and everyone in this locked down unit.

The place Mom is going to does not have a locked door. The residents – there are only 12 – can come and go as they please. It is in the country with 13 acres and horses across the street. There is a huge covered driveway with rockers and chairs. The residents love to come outside but they don’t go far. Everyone watches out for each other. Some of the residents do not have memory problems but everyone there is treated just the same. No one is behind a locked door meant to keep them in and everyone else out.

Mom and I drive to the new facility, singing songs along the way. It astounds me that she cannot hold a conversation but she can remember the words to, and sing, any song that she knows. She is having a great time, and I’m just happy to be with her again. We stop at Whataburger where Dad with his caregiver are – we say hello across the car windows. I’m not entirely sure Mom realizes it’s Dad – she’s pretty intent on eating her hamburger one piece at a time. She takes it all apart and eats each piece by itself. She makes a huge mess, just like a toddler would. I have to remind her to take a drink of her coke. She no longer runs her tongue across her teeth to clean them while she’s eating – an action we ALL do without thinking about. I find it difficult to be with her while she’s eating because all the things she can no longer do are exemplified. I try to avoid meal times. I don’t want to be hit in the face with her inadequacies.

The room at her new place is so much smaller that we have to leave some of her furniture on the trailer. It doesn’t matter though. Even though the room is small I am sure the care will be better. The dining and multi-use room is only a few steps away. You can always find a caregiver – at the old place I would wander the halls looking for someone and never find anyone. The men are busy trying to put together a dresser that turns out to be a POS. So I take Mom with me when it’s time to go pick up Baby Girl from school. She’s been in the car a lot today but you can tell she doesn’t mind – she’s just happy to be with me.

When we get back to the room my brother has to leave. Baby Girl and I take Mom into her room so she can finally see it. She seems pleased with it. She plays with Baby Girl who is hiding behind the shower curtain. Mom laughs when she jumps out and says Boo! The time has come to leave Mom there but I feel reassured that the staff will care lovingly for her. Her room is nice – cozy with all the pictures of family and roses that she loves. I notice that all her expensive toiletries are missing. I didn’t buy this Suave shampoo. I would never buy that. Mom uses John Frieda! I am appalled as I realize that her shampoos and lotions and soaps have been taken – stolen – by someone at the old facility. Chances are it never made it up to her room from when I had to drop it all off at the front desk in enticing Target bags. I am burning with rage but there’s nothing I can do. I’ll buy it all again so Mom will have HER stuff that she’s always used and loved.

That night I sleep better than I have in a long time. My mom is closer to me, and in good hands, and I’ll be able to see her again soon. She won’t think that she has been forgotten and abandoned. She will know that I am still here, still loving her, still her champion and her advocate. She will never again have to say “where have you been?”

I am here, Mom, right here with you. Always.

In all my life I never had a need to learn to cook. My mom was a great cook, and she loved to do it. She made fabulous meals for every get together, and always made too much. Thanksgiving, Christmas, Easter – it was always at her house and she was the host. Cheese balls, dips, chips, veggies, fruit salad, it was all there ready to snack on before the main meal even began. She used to make this absolutely phenomenal Brandy Dip for fruit that I simply couldn’t get enough of. She modeled it after the stuff you get at La Madeleine with the strawberries, which probably doesn’t have actual brandy in it, like Mom’s did.

We used to make fudge at Christmas. All kinds of fudge. We passed it out as gifts. Maple Walnut, regular chocolate, mint chocolate, peanut butter, I can’t even remember all the types we tried. She taught me to make it so that I can do it in my sleep and that’s a tradition I will always have in my heart. We laughed so hard when one time she forgot to put the sugar in… she was stirring and stirring and getting all sorts of irritated – why isn’t this turning? she fumed. I looked over – well Mom it sure doesn’t look right, did you put everything in? And that’s when we discovered no sugar! We simply laughed, threw it away and started over. Mom and I loved to go to Hobby Lobby to buy all those little containers to put the fudge in. We loved Hobby Lobby, period. In fact, on the very last outing I took her on – in February – we went to Hobby Lobby. I pushed her around in her wheelchair and she had a great time just looking and looking.

When Mom discovered how much I love almond extract she made an entire recipe up just for me. She took Lemon Cookies and turned them into Almond Cookies. They even had almond frosting on them. They made the largest batch of cookies you’ve ever seen – like 48 cookies or something insane – so it would have been sweet of me to share them with everyone…. but I didn’t. Her chocolate pie was to die for. I used to request that, along with twice-baked potatoes every time I came home to visit. And Dad would make chicken on the Big Grill just for me, even though everyone else wanted steak.

Mom had this way of cooking that was so like Julia Child – just flinging flour and shit everywhere and not caring one jot about cleaning anything up until later. I don’t know if I was amused or horrified but I definitely have a habit of cleaning up as I go now. She would have large flour handprints on her black pants that she almost always wore – I think she had about twelve pairs of black cotton capris. She didn’t care about the flour – she’d just shrug and smile and keep going. She had a wonderful habit of cussing as she cooked. You’d hear her muttering “shit!” and “fuck!” as she fiddled with something over the stove or as she tried to maneuver something into the oven. Her fridge was a haven of things long forgotten about.”Mom! What’s in the sour cream container in the back here?! Is it actually sour cream?” Hell I don’t know! She’d reply. We cleaned out her cupboards once and found canned goods from the 80’s — no lie.

Mom is short – so she had her library stool that she kicked around the kitchen in order to reach things. I have that stool in my kitchen today. It was a bittersweet moment when I took that from her house and put it in mine. I remember she used to have this yellow plastic tea pitcher that she’d toss some lipton tea in – without measuring – and then stand at the sink sighing while the water ran full blast into the pitcher. It was such a “moment” for her. I wish I still had that pitcher.

Mom made me anything I wanted – even as a kid. French toast was my favorite breakfast and I’d stand watching her flatten it into oblivion with the spatula. Why do you do that Mom? I asked one day. I don’t know, she shrugged – I’ve always done it. So now, of course, I flatten my french toast with the spatula. Maybe it makes it taste more like the bacon grease, I really don’t know but I still do it. And I think of Mom every time.

There are so many memories of Mom in her kitchen. In Harker Heights – where I lived as a kid – the eating area was in the kitchen and she used to sit at that table and smoke and read way into the evening. That’s where I’d find her if I needed to talk to her about something. That’s where the wall phone with the long cord was, where the kitschy trash can she found in Canton was, and the wire mesh basket that hung from the ceiling that held the potatoes. That wire mesh basket used to hang in the kitchen in Tyler, too, and finally made its way to my own kitchen. I also have the 70’s spice rack that is dark brown with faded and peeling pictures of all the spices on the front. I actually use it, too.

There are some things you just can’t let go of. In my mind my Mom will always be in her kitchen. And I’ll always be there with her, talking and laughing and eating and smiling and living and loving her.

A feeling of pensive sadness, with no obvious cause.

The strains of Mary Poppins play in the background – I can hear Baby Girl humming along. The cat is in his custom built cat tower right next to my desk. I’ve got someone coming to feed the horses for me while I can’t. I found a pony for Baby Girl to start showing on. You would think my life is right on track.

Except it isn’t. The wetness, the dreariness, the boredom of not being able to do much with this cast on my foot. I am drowsy and I want to sleep. I want to escape – from what? I haven’t a clue. Just to go somewhere where I don’t have to think, or dwell or act. I know the word is depression. I know it well. I wonder if someday my constant companion will take up his hat and his suitcase and go. I long for that day.

It crept up on me. Through the years I know I’ve suffered from that word. But in the last two years he’s crawled his way in and just won’t depart. If I can pinpoint it, it must be when I learned my mom has Alzheimer’s. It all goes back to that. To lose her without her actually going anywhere – it’s terribly unjust. To watch her falter, then flail, then just wither is more than anyone should have to bear.

In these COVID times, with the facility she is at, I have not been able to see her, or spend any time with her. She is more distant from me than she has ever been. I have no idea of her day to day-ness. Nobody tells me anything about how she is doing, if she’s eating, if she’s sleeping, if she tries to talk about us. I hear Nothing and Nothing has angered me.

A week from Monday I am moving her to another facility. A much smaller place with only 12 residents total. It’s like a home, where everyone is together much of the time. Where the residents can go sit outside on the front porch as much as they want. Where the director will get her a cheeseburger from McDonald’s if she desires one. Where there is plenty of nature – birds, horses, trees and flowers. A gazebo just outside her window. I’ve ordered the cat a cat tree to put beside the window.

There is no locked door to keep people out.. or in. Only the front door to be locked at night as you would anywhere you live. Her bedroom is across from the kitchen – where the ladies and caretakers gather to help cook if they like. The meals are all freshly made, and made to order. There is only one floor and very little space for her to trip and fall. There are games days and activities for ALL – families invited. Now, of course there are still COVID restrictions. But the truth is I can go and see her anytime I like, I can take Baby Girl. My Dad can go every day if he wants to. She’ll only be twenty minutes away and it’s going North – no traffic to contend with!

I am worried, of course, that the move will be hard on her. She’s been where she’s at for nine months. She’s gotten used to it. But I haven’t. I need her close to me. I need to see her, and be with her. And of course, how would I know if she’s happy? Certainly nobody is telling me she’s NOT. Why would they? When they try to FaceTime so that we can see each other more often than not I can’t even hear her, and she can’t hear me, due to all the background noise. They give her the phone to give her some “privacy” while she talks to me but she can’t even hold the phone so that I can see her face! It aggravates me so much I stopped bothering.

I’m looking forward to the move. I believe it’s the best possible outcome for all of us. Baby Girl asks me all the time when is Granny coming home? It’s the hardest thing in the world to tell her she’s not. At least now she’ll be able to see her weekly – at least!

And maybe my old companion will let up a little. Maybe he’ll go on a vacation. If I can feel like my Mom is truly settled and happy then maybe, just maybe, I can be happy too.

 

Baby Girl lies to me daily. With emphasis. She insists that she is NOT tired, not at all, not even just a tiny little bit. Then why are you crying? I ask. “NOT because I’m tiredddddddd” she moans.

Girl you were born tired. You haven’t slept right in six years. Neither have I. I KNOW tiredness. You, my child, are the epitome of tired. You almost have me beat in the tiredness game but not quite. I’m more tired than you because I’m in more pain than you. Because I’m old. Because I was old when you were born.

Baby Girl also has severe FOMO. Fear Of Missing Out. She can hardly stand to make decisions because she can’t decide which route will lead to the better time. The more fun experience. Does she come with me to run errands – which I can assure you is never fun – or does she stay and hang out with Dylan in the barn? She wants to be with me – she wants to be sure I don’t do something fun without her. Buuuuuttttttt she knows the girls at the barn are always accommodating to her. She is the princess of the paddock y’all. Everyone accommodates her. She’s cute and she loves hanging out with people. Possibly everyone is really accommodating ME by keeping her out of my hair…. hmmm. If that’s the case then I’m grateful. Supremely.

At any rate, Baby Girl has red eyes and a quick temper – every minute of her life. She certainly looks tired. And 80% of the time she acts tired. She yawns a lot. She falls asleep in the car but she won’t take a nap. The other day I bribed her with “movie night” in my bed if she would just lay down with me in my bed at 1 pm. I watched YouTube Kids with her for twenty minutes as part of the bribe (heaven help me). We took a “sleepy pill” (melatonin). We listened to Alan Jackson. She finally did fall asleep and slept for almost two hours. Of course, then I was unable to get her to sleep that night until 10 pm. You can’t win for losing.

Each night she starts to spin in a downward spiral of exhaustion. We have our routine down pretty well but it doesn’t slow the spin. After I finally get her out of the bath it starts in earnest (many times it starts while still in the bath.) She starts out with whining that she is cold, her hair is dripping down her back, she needs me to help her get dressed.  Somehow she’ll manage to hurt herself – stub her toe or scratch something. Then… it’s the giggles. She laughs while I try to put her pj’s on. She shows me her booty. She farts and is hysterical. She makes me crazy, and let’s acknowledge it – pissed off. So I finally lose it and yell at her. Her eyes fill with tears and she runs off to hide.

Now, I ask you, if she knows this is what will happen why does she do it? When we finally get past that, I have to tell her twelve times to brush her teeth. To pick out her stories. She likes to have stories on the computer lately. But if anything, and I mean anything, is not to her liking, total meltdown ensues. And again, I get frustrated. I would like to have a few minutes of sweet snuggling with my Baby Girl, not tears and rage from this wee monster child. I’m tired too so we feed off each other, I’m sure.

Maybe I would be able to handle all that if it weren’t for… the fact that she also GETS UP at 6 am every day. EVERY DAY. Even now that I have her sleeping in her own bed, in her own room. If she hears me make a move she’s up like a shot. I’ve even moved the cat into the back room at night so that he won’t start yowling and wake either of us up. It helps. A little. I want to get up to go to the gym by myself. I much prefer going by myself – it’s that “me time” everyone talks about so much that I hardly ever get. Well Baby Girl does not want me to go by myself. I get my cup of ice water ready the night before, my clothes are laid out, my shoes by the door. So I can sneak out silently before she hears me. (Insert eye roll here). I make it to the gym maybe twice a week, and at least one of those times she’s with me. Y’all it just isn’t as much fun when I have to keep looking over and checking on her.

And even if I don’t aim to get up early and go she wakes up anyway. It’s just hardwired in her. Her brain just knows there’s got to be something more interesting to do than sleep. 9 times out of 10 she wakes me up, too. Wait, no. 10 times out of 10. Who am I kidding?

So here we are, mother and child. Both exhausted, all the time. I’m so tired I’ve almost given up drinking.

Almost.

Plus, she is so cute when she’s asleep.

 

A bubble of despair sits on my chest. It’s heavy and it’s making its presence known. If someone looks at me sideways – or doesn’t – it’s going to explode into rivulets of tears down my face. This bubble welled up out of nowhere, I’ve already had one explosion today. In my bedroom, dark and deep, where no one could hear or see it. But apparently my grief and fears want an audience because it’s back, and larger than ever.

My husband sits down with me on the couch and just like that the bubble pops. Baby Girl doesn’t know what to do when this happens, she wants to cuddle and pat my arm but she is shooed into the playroom because “Mommy is sad.” Mommy IS sad. It’s the type of sad borne out of an unableness to fix what’s wrong. Mommy is used to fixing what is wrong.

What do you do when you no longer have control? How do you watch your loved one wither and morph into something you don’t recognize, and which doesn’t recognize you? I’m not sure, I tell my brother, that she knows exactly who we are, but she knows we are important to her. She knows she loves us. She knows she wants us there. She does not call me by my name.

She is in the hospital, and I am sitting by her watching her sleep. I have moved a chair so that I can finally hold her hand, after three months of not touching. I rub the soft spot between her thumb and forefinger. The corners of her mouth are turned down and there are tears at the edges of her eyelids. Her chin is a mess of black and blue from where she fell. There is some dried blood around her mouth. I  notice long hairs on her chin and upper lip that I know she would be mortified by if she knew they were there. I am struck by an urge to pluck them for her, but obviously I do not. She has gained weight and her arm is a bit swollen from putting the IV in. She wakes up and looks at me briefly. She is calm and for that I am grateful.

My mom has been in the ER and then in a hospital room since Wednesday night at 11 pm. It is now Friday at 8 am. I talked to the ENT that transported her to the hospital and was assured the hospital had all my information and would call me. I hear nothing further all night long. When I called the facility where she lives at 9 am Thursday morning I am assured she’s in her room, resting. I am relieved and go on about my day. Thursday afternoon at 4 pm a phone call tells me she has been admitted to the hospital. From …. where? I ask. From her room? What is going on? No, she was never brought back to the facility. She was in the ER until 1 or 2 pm today when they finally admitted her.

SHE WAS IN THE EMERGENCY ROOM ALL ALONE FOR 16 HOURS?! Horrified, I immediately call the ER she was taken to and the person that answers was actually my mom’s nurse. What on earth? I ask. Why did no one call me? I had no idea she was there by herself! The ER nurse said that they did not have any phone numbers. And you couldn’t call the facility and GET my number? “No,” he said. “I didn’t bother to do that.”

Y’all. Have you ever felt so enraged that you could jump down that phone line and rip someone’s F&(#$&% balls off?

You didn’t bother? I slowly state, just to clarify what he said. “No,” he said, and “I can see this conversation isn’t going anywhere so can I just transfer you to the third floor where she is now?”

I get that he was probably pretty busy but seriously WTF. She has Alzheimer’s – I am SURE the ENT told them she has advanced dementia. She was all alone in a place she did not recognize, could not speak for herself, and did not have anyone to advocate for her. She must have been absolutely terrified. That nurse took advantage of the situation and knew that my mom could not understand, and could not speak for herself and HE decided she would not remember and therefore was not AN ACTUAL PERSON who needed a family member. To top it all off, I also found out that one visitor per person is actually now allowed at that hospital so I could have been there with my mom the entire time. Actually physically present.

I. Can’t. Even.

I called my brother. He promised me that he would “do what he does.” Heads will roll and if that nurse isn’t fired I will be surprised (and pissed off.) I am usually all about forgiveness, and making mistakes and people being people and screwing up. NOT THIS TIME. In no way does that nurse NOT deserve to be fired. He clearly did not care about his patient. Her emotional needs were not considered. He did not care when he was speaking to me, he simply wanted to pass me along and get me off his back.

There are so many things that are wrong here. Mom is finally back in her room, with her cat, whom she does know is named Margaret. I believe she is probably doing as well as she can be. She was not actually injured from either her fall, or her prolonged stay in the emergency room. She doesn’t actually know what happened – she insisted that she “didn’t do it.” Whatever IT was in her mind – she was sure she wasn’t at fault. I can hear her, in my mind, and I know she was scared.

There is so much more I could say about being with her in the hospital, and how she was, and what my thoughts were. About how we finagled the system and got my Dad to meet us in the lobby so he could see her and hold her hand for five minutes before I took her “home.” I have so much to say. There is so much that I feel. But grief is the top emotion, and grief is what causes the bubble of despair. I am supposed to be my mom’s advocate. I was denied the opportunity to be there for her, and I am filled with anger.

So today I am a mushroom – hiding in the dark and hopefully gaining a little strength by being alone so that next time, next time, I can be there for her in all the ways that matter. I am her advocate. I am her daughter. She is not alone, no matter what that ER nurse thought. She has people. SHE HAS ME.

We are at the zoo, Baby Girl is having a screaming fit in the souvenir shop. She’s clutching a blue and white striped stuffed zebra and weeping, wailing and moaning that she wants a decoupage owl as well. She knows she only has twenty dollars to spend – her birthday money. She knows the two items together are way over her budget and she has been told she has to choose.

We spent time discussing how much money she would have and what she could expect to buy with it in the car on the way to the zoo. She has been looking forward to going for a week, every day asking if it’s the right day yet. I do everything I can to prepare her for the day. I tell her we will do the water park part of the zoo if there is time, but that we are going to see the animals first. She insists on giraffes (of course) and zebras and a snowcone. She wants to ride the train. I pay $8 for a two minute train ride. We do everything she wants to do.

Then we get to the water park and look at our watches. There really isn’t time to enjoy it and with COVID they are only letting a certain number of people in at a time, so there is no way to tell how long the wait will be. It does NOT seem that they applied this same theory to the zoo itself, though, as it was crowded and plenty of people in my six foot space bubble at any given time.

Baby Girl sees the picture of the water park – she points and yells for us to look! She’s excited beyond measure. She’s also exhausted. She only slept eight hours last night and she always needs at least ten. There are two reasons she doesn’t get enough sleep – one is that if I have lessons or we do anything out of the ordinary she will not go to sleep on time. She has classic FOMO syndrome – Fear of Missing Out. She fights sleep like a two penguins fighting for the same rock. She’s NOT GIVING IN. She gives me a hard time every single night over every single thing. And it makes me tired, and angry. I don’t understand her willingness to piss me off just to play up and be silly at bedtime. She definitely doesn’t take the easy, compliant road. Melatonin is our best friend. Her sleepy pill wins the day every single night. 99% of the time she falls asleep right beside me and I end up moving her to her pallet on the floor.

The second reason is that she wakes up too early. I wake up early every day. Usually it’s because of the cat yowling at me. The cat is 14 – surely they don’t live much longer right? But if Baby Girl senses that I am awake she jumps up and follows me. She will not lay back down – she will not relax and go back to sleep. Therefore, more often than not, she does not get enough sleep.

So back to the water park. I lean down to explain that we will save the water park for another day. You can imagine the response. Eyes roll back, crocodile tears well up and she is bawling – noooooo I wanna swimmmmm….. – I try explaining every which way I can and end up just turning and walking away. Which is very hard to do when you know that she clearly has a fear of being left and also when you have a fear of her being snatched. But I safely walk away and she does dry it up and follow me. Yay I think – crisis mostly averted!

Which brings us to the prize shop…… I am standing there completely bewildered. I know why she is acting this way. I also know that I am embarrassed and that I am not very sure what to do. She screams loudly when I grab her arm to tell her to cut that shit out. Anytime you grab her arm she screams and tries desperately to free herself – at home, at the store, in the damn zoo shop. It’s the worst possible thing she can do to me. I am certain someone is going to think I am abusing her, or worse, kidnapping her. I make her pay for the zebra and we’re out.

We leave the gates and she tells me she has to pee. SERIOUSLY KID?!?!?!? I know she’s going to fall asleep the instant we get in the car (she does) and before I can find a bathroom. I drive in peace for thirty minutes. Then she starts to cry. She starts to cry before she wakes up. She then wakes up fully and is crying even louder. She has to pee. I know!!! I know, Baby Girl, I am working on it! It takes me twenty minutes to find a bathroom – y’all know the stretch of I-35W where there is absolutely nothing for miles? That’s where she woke up.

At any rate we finally do find a bathroom and some doritos and we drive the rest of the way home. I turn the TV on for her and lay down on my bed – I pass out for thirty minutes.  I often feel like most Mama’s would be able to handle all of this way better than I do. I often feel weary and inept. I tell myself most Mama’s must have more patience, or more alcohol, or something. I cannot deal with Baby Girl’s temper. It frustrates me at the best of times. She is also always wanting MORE. Do I chalk this up to wanting to explore life at a record pace? Do I indulge her passions? Do I think wow this kid wants to learn and do and I should encourage that?

Yeah… no I don’t think any of those things. I think how exhausting she is. I think about how she is never satisfied. I think how do I make her more grateful? I think how do I make her SLOW DOWN?! I think when can I just relax?!

Have a moment with me, mama’s. Life is hard and passionate children make it harder. I pray that someday all this drama and persistence will turn into something positive for her and into a nice shady front porch with a drink in my hand for me.

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.