Julie Tullos

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?

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.

I remember now. It was about the blood thinners Dad was on. We had to be sure he was off the blood thinners before the scheduled surgery for the Wednesday after I returned. Who could take him off of them? Certainly not the rehab – they needed a doctor to put in an order. We spin around and around for a full day before my brother gets the answer we need. No more blood thinners as of Tuesday, a week before the surgery. At ease, I order another drink from the bar and go back to baking.

I return on a Thursday and Dad is doing ok – he’s alone a lot but he seems to be coping. He’s going down to the dining room for meals (assisted of course), and he’s eating well. He’s watching HGTV non-stop until all my enthusiasm for the channel has been thoroughly squashed. Not only is it on every single time I am there, but whenever I call him you can hear it perfectly in the background, as it’s so loud. Turn that shit down, Dad, I tell him. He likes the one with the two redheads – Mom and daughter. The mom is bat-shit crazy he tells me. And the daughter ain’t bad to look at but she’s pregnant in every other episode. 

On Monday he’s released from rehab and Baby Girl and I go to pick him up. We stop at McDonalds and get fries, which he eats in between coughing spells. The coughing is terrible – a dense, dry attempt to get something up. It’s a good thing I have a towel in the car as eventually he has to spit everything out. I am wondering what’s up as I haven’t heard this strange coughing before. He hacks and chokes all the way home. Aunt Patty is due to arrive again later that day and I happily let her take over as I am one hundred percent exhausted.

On Tuesday Aunt Patty takes Dad to his pre-op appointment which apparently goes fine, and I am told that Dad has to be there next morning at 6 am. EGADS. This means a 4:30 am wake up call for me, which honestly isn’t that bad – horse show mornings call to me. I love the sky at that time of morning, and the stillness and the chill (well not in August). Like nothing at all has happened yet and anything is still possible.

A couple hours after dropping them off I hear that the surgery goes well and I return to take them back to the house. Dad is tired of course, but functioning. We are optimistic. The biopsy results should be back by Monday. Aunt Patty can’t get Dad to eat that day, though, and every time he takes a drink he chokes and coughs. We think maybe just soreness from the surgery, maybe swelling? We don’t know yet that the tumor has basically shut off his esophagus. The epiglottis is not able to function properly so anything that goes in, goes into his lungs.  These are details that we are unaware of as yet. 

By Thursday Aunt Patty is really concerned about the congestion. We get a call in to his doctor and procure some antibiotics. But when the home health nurse comes later in the afternoon she tells us his oxygen levels are way too low. She says we have to take him to the ER. He is extremely congested and not getting enough oxygen. Aunt Patty takes him as I stand by at home. 

This is when they stay in the ER for nine hours before they get a room. This is when we find out a whole lot of things we didn’t know. Like he has bacterial pneumonia from aspirating his own saliva. Like his throat is basically blocked. Like he’s not getting enough oxygen because he can’t breathe properly. Like things are way worse than we thought. 

That was a week ago. So much has happened while Dad has been in the hospital, but on the other hand nothing has happened at all. We learned on Friday – thanks to the hospitalist doctor that called the ENT – that Dad’s cancer is called squamous cell carcinoma. We all rushed to google it. It’s just a type of throat cancer that is currently located in the tonsil. Nobody has ever said that there is more than one tumor, or spot, even though I am SURE I saw more than one on the PET scan. It has been called tonsillar cancer, throat cancer, glandular cancer. I was told that the glands are continuously excreting cancer cells. That it may not have spread to the lungs but then again it may have. The nodes are too small to do a biopsy on. Thursday through Saturday was spent trying to beat the pneumonia with antibiotics, watching HGTV and wondering about nutrition as he is not allowed to have anything by mouth. 

Sunday I am with him for an hour – I try shaving him with an battery operated razor I have just purchased at Walmart. I don’t know what it is meant to shave but it certainly isn’t hair. We bemoan the lack of functionality in today’s electronics. Cheap shit from China we agree. I say I’ll take the damn thing back. Dad suddenly looks at me and says “Do you know what’s wrong with me?” I say “well you have pneumonia, Dad.” He responds with “well that beats the hell out of cancer.” I swallow hard and say “you have that, too.” Dad just looks at me and then looks away, eyes closed. We don’t say anything more about it. I saw the pain in his eyes, though. 

Sunday until Wednesday was spent watching HGTV and waiting for the PEG line to be placed. As each day came and went Dad got weaker and weaker. Clinimix was given (lipids and fats) through an IV but no protein. By Tuesday when Dad was thrashing around and hallucinating he didn’t even look at his phone. He didn’t want to talk to me, as if he just couldn’t make sense that it was me that was calling him. Aunt Patty tried but he showed no interest. I didn’t go to visit him those two days as I knew Aunt Patty was leaving on Wednesday and I’d be with him all day. So I try to get things done at home while she’s still there. Aunt Patty texted me Tuesday night and told me there were days in Hell better than today. I’ve never heard or seen Aunt Patty in tears but I imagine she might have been.

We had no idea what was coming.

I started writing this on Wednesday before Dad died. I didn’t know what would happen. I wasn’t sure I could finish it. I have not changed what I originally wrote – I stopped writing on Friday August 20th. I picked it back up today. There are three parts to this story.

WEDNESDAY AUGUST 18, 2021

I stand by the side of Dad’s hospital bed as he tries to open his eyes. He doesn’t see me. His breathing is at best raspy and at worst like he’s drowning. The sound of him gurgling will be my constant companion tonight. So far today he’s had his lungs deep suctioned at least once, been on oxygen multiple times, and has been in the OR for a PEG tube so he can get some nutrition, at last. He hasn’t had any food in seven days. He can’t swallow on his own. He can barely talk. His mouth is so dry his tongue must feel huge in his mouth. He’s been sleeping most of the day, seemingly painlessly, thank goodness. Yesterday he thrashed and tried to leave the bed and couldn’t make sense of anything and hallucinated like he was on LSD.

Dad does not have COVID. He doesn’t even have COVID related pneumonia. Dad has cancer. The tumor that has invaded his throat, which started in his left tonsil, has grown so that he can no longer swallow. It is pressing on his carotid artery, which we assume is causing his confusion. It was found in lymph nodes on both sides of his neck. The pneumonia that put him in the hospital was caused by him aspirating on something because he was having trouble swallowing. But we didn’t know. He didn’t know.

We were pretty sure a throat cancer diagnosis was coming. A couple of months ago Dad fell in his home and was sent to the ER by the EMT’s. There they found nodules on his lungs during a typical chest X-ray. He was referred to a pulmonologist who ordered a PET scan (positron emission tomography). A PET scan is often used to detect cancerous cells in the body. The lung doctor let us know that the nodules in his lungs seemed harmless (for now) but that he detected “something” in his throat which needed to be checked by an ENT. So we made that appointment and waited anxiously for the day. Emotions ran high with all of us, one minute we were thinking lung cancer is definite since his own Dad died from it, and the next we’re dumped into throat cancer territory. All unknowns to us, as none of us have ever really experienced knowing anyone with cancer. 

A week before the appointment Dad falls backwards and hits his head on the fireplace. He 

refuses to go to the ER although the wound is deep and bloody. Somehow he lost his balance with his caregiver standing right there next to him – and she was unable to stop him from falling. He seems ok, though, so we all take a deep breath and just move on. We are all super concerned at this point about his confusion and his lack of balance. We discuss endlessly and come up with no answers. We talk about cirrhosis, we talk about dementia, we talk about urinary tract infection. Home health runs tests and rules out a UTI but it takes a full week and we are all irritated with the delay. 

The morning of the appointment arrives and Aunt Patty and I load Dad up into the car. Dad is worried, of course, though he won’t talk about it. At least not with me. Dad and I have zero ability to talk to one another about things we are deeply concerned about. I believe it’s just us trying to protect the other one. We just don’t talk about the bad stuff. I want to talk to him about it, but I’m met with a shake of the head and a “let’s not talk about it until we know what it is.” And since I’m also afraid of the answers I easily let it go. 

Apprehensively, we wait in the doctor’s office. Before he comes in an assistant pulls the PET scan up on the screen. I go over to look at it. I see bright blue spots, multiple spots, all over his throat. The biggest one right where the tonsil is. I know immediately what it means but I keep my mouth shut. When the doctor comes in he does not acknowledge the cancer. He feels Dad’s neck, he looks in his throat, he says “yes, we need to do surgery to take this tonsil out.” He doesn’t use the word cancer. He says we can do the surgery Wednesday. None of us ask the question. We leave feeling drained and discouraged. 

And then we are told he needs multiple “clearances” before a surgery can take place. As we pace the floor and start making phone calls and appointments and with a heavy blackness over all of it, Dad has a seizure. He’s been sitting outside on the porch – something he hasn’t done in a while due to feeling so poorly – and his caregiver is helping him come inside. He sits down on his walker seat and she is maneuvering him into the house when he goes stiff and his eyes roll up and he starts to shake a bit. She calls his name and gets no response. She says his name again, and he responds “yes” but without making eye contact. She’s about to press his Life Alert button when he finally looks at her and stops shaking. 

Home Health is called. They say we need to take him to the ER. It could be a brain bleed from the fall against the fireplace last week. I cancel my evening plans, load Dad up and we head out. At the hospital they check out everything. Ironically they do another chest x-ray. Dad is very dehydrated. They admit hjm, but after a few days of everything under the sun they cannot find a reason for the seizure other than dehydration and low vitamin B12 levels.  At this point surgery on his throat has been delayed a week. Now we spend every moment on the phone trying to get the cardiologist to agree to give consent for the surgery based on the records from the hospital. It’s not like we can take him to the appointment. Finally after hell and high water we get it. The cardiologist signs off. Now another hurdle – Dad is going to rehab. Surgery cannot happen while Dad is in rehab. He has to be discharged first. Baby Girl and I are supposed to go on vacation and my aunt, my Dad’s older sister, won’t be available either. We get my brother to come down for the time we are gone but regardless I am still dealing with things over the phone – I can’t even remember what all it was at this point. Stressed and tired, I try to enjoy the beach with Baby Girl. We hang out mostly at the pool after sand invades her swimsuit and she cannot handle the saltwater in her face. I buy drinks from the swim up bar and let the sun bake me. 

God is in control, right? He has to be because I surely am not.

More to come…

I had a dream the other night that my Mom had died. And when I went to the hospital to see her I learned that she really hadn’t died at all. That they had taken her off of a medication she was on and the result was that she was completely back to normal. Her old self. Before Alzheimer’s. I was astounded, and so very happy. It wasn’t a sad dream at all. I was able to be with her and talk to her again and have her talk back. I don’t remember if we actually said much at all during the dream, but what I do remember is just such a feeling of peace and calmness.

I thought about the dream all the next day. I carried it with me. I told my best friend Pooh about it. I wondered what it meant. I thought that maybe it was referring to the deep seated fear I have that my Mom is really ok inside her head, and she just can’t tell us. That she’s trapped, so to speak, like those people we hear of in vegetative states whose brains are actually ok but they are paralyzed and not able to communicate. I realize there is virtually no chance that this is the case with my Mom but still the thought of it haunts me. The fact that she has lost control of bodily functions, eats with her hands and has forgotten how to clean her teeth with her tongue while she’s eating means that her brain really isn’t working at all. But still I worry. Because I know that if this were the case she would be truly, truly miserable.

The last few weeks have been tough – Mom has cried and been teary on several visits. Including one time when I FaceTime’d her and she cried because she couldn’t touch me – she was able to communicate that enough that we figured out what was wrong. Her whole face lights up when she sees me, and she immediately reaches for me, so I know that FaceTime really isn’t a good second option if I can’t get there. In fact, that day I was so unnerved by her tears that I dropped what I was doing in order to drive out to see her. Even though I had already told myself I didn’t have time, that I was too tired as well.

And the time before that she cried as well. Teared up a LOT the entire time I was there. I think always that her tears are not just tears because she missed me, but also because she so desperately wants to tell me something and can’t. A few days later her nurse, Roxie, put her on a new pain medication and that seems to have made a difference. Maybe she was in pain. Maybe when she saw me she thought “here’s Julie – she’ll be able to know what I want.” And then frustration because I didn’t.

There’s no shortage of pain and guilt and sadness and rage within me. But as I sat with her one day a week or so ago something new crept in. A sliver of acceptance. It snuck in across the floor and slithered its way up to where I sat, her hand in mine, and touched my heart. She was dozing and I was quiet, sitting there watching, and I felt it. And I was glad. Acceptance means I can see her now in a new light. I can appreciate the beauty that is still there, the way love still radiates from her eyes. I can be more still when I’m with her, not always trying so hard to DO something, but just to sit, and be quiet and hold her hand.

Mom doesn’t care if I fill the birdfeeder up with birdseed. She doesn’t care if I walk her around the building or down the street – although she does enjoy it very much. She doesn’t mind if I don’t bring a new book to read. I don’t have to find a new way to reach her. Her hand in mine, the joy in our hearts is enough.

Pooh said maybe the dream meant a release from pain and a newfound peace. She was referring to when Mom actually does pass away. But maybe, just maybe, we’re already there.