Author: Julie

Sometimes the end is just a different beginning. For my Mom, the end of her earthly existence is the beginning of her heavenly life with my Dad and all her other loved ones that have passed before her, especially her Daddy. Having passed away tragically when she was just 20, she missed him immensely all her life. If you asked her the what the best part of her childhood was she would tell you “playing in the yard with Daddy.” This is a girl that had a pet raccoon, a pet
monkey and a pet rat (appropriately named rat-rat), who lived in Hyde Park of Austin, went on numerous vacations and had wonderful friends that played dress up and had doll tea parties with her. Seems idyllic. But things aren’t always as they seem and life became harsh when her Dad died (and probably before due to his manic depressive disorder). She never got along particularly well with her own mother and my Dad provided a much needed escape and the security to live her own life.

Early love letters are filled with “darlings” and “dears.” They were two halves of a whole and couldn’t live without each other. Dad understood Mom in the way that most men understand women. She needed love, patience, a strong shoulder to cry on and security and he gave that to her and so much more. Early pictures of married life show a very happy couple and a gorgeous woman that I can’t even believe is my Mom – she just glowed – but always with a tinge of sadness in her eyes and way of being. Just a tinge. She was very private and wasn’t going to share her emotions with everyone.

In a way, they never did have to learn to live without each other. As Mom’s condition worsened she forgot who people were, and while she recognized me the longest, after Dad died she never asked for him. Out of sight and out of mind…. sad to say but that’s the truth, or she didn’t have the words to wonder where he was, which is a distinct possibility but one that I don’t dwell on because it hurts too much to allow it. I prefer to think that she truly didn’t remember him after his death. She was so fragile at that time that we never told her he died. The day before Mom passed I kept telling her that Dad was waiting for her, that he was there before her and needed her with him now. I didn’t want her to somehow be “waiting” for him, needing to hear his voice one last time. I didn’t know how much she understood, if anything, but I felt it was important to let her know he was there, waiting to dance with her again.

Dad couldn’t handle living without Mom, either. I remember asking him once if he would be able to try and go on without her after she passed, and he wouldn’t even contemplate it. He just said “I’ll try.” He didn’t want her to go into a care home, because even though she was angry and bitter (and scared) due to the disease – this was the year before she went into the memory care facility – at least she was THERE, with him. And not having her in the house with him was incredibly difficult for my Dad. I think the cancer was a blessing for him, because they literally were only truly apart for 18 months before being reunited in heaven. He didn’t want to live on without her, and he didn’t have to.

If Mom hadn’t had Alzheimer’s (and I’m not saying it was a blessing) – she would have had to try to live without him. She was a very strong woman, but she couldn’t make it without her man. So God must have done what he felt best. That’s the way I have to look at everything that has happened in the past four years.

Is it the end for me too? It’s the end of suffering for my parents’ sake. It is the end of worry and stress and advocating on their behalf. These past four years have been the hardest of my life. I am all cried out. My eyes are as dry as a desert in Mexico. As people filed in and said goodbye to Mom, there were plenty of red eyes, sniffles and tears. And I was jealous. I wanted to cry, to rant, to rage, to weep and to bawl. But I can’t. I am numb. My grief has been spent over four long
years and while maybe I should feel some relief at last, relief that my Mom’s suffering is at an end, and for my Dad – that they are together again, I don’t. I don’t feel a thing. I must get all the last bits done for them. There’s a visitation to be held, a service and a burial. There’s banks to call, and the Army to inform. There’s my house to clean and food to cook for after the visitation.
There’s her room to clean out. There’s so much to do. I am not done yet.

I listened to songs this morning in my car. Songs that have made me cry in the past. Songs I can really relate to. Nothing. No tears. No lump in the throat. I am not without feelings. But what I feel most right now is just…. empty.

A new beginning is waiting for me. When it will start, I am not sure. When my heart fills back up again, maybe. When my Mom is in her final resting place with my Dad, maybe. When I see the headstone for the first time, maybe. I do not know what the future holds for me now. It’s time to reinvent myself, in their honor, and with their undying love for me and each other, to step up
once again and become me again.

This end is just a different beginning

Mom’s light is fading. I think I’ve really known this for awhile now, but it became clear last night when I talked to her hospice nurse, Roxie. Roxie has always cut straight to the truth and I appreciate that about her. She has told me every little thing that I need to know about Mom’s health and she is literally an angel on earth, along with her partners that see to Mom when she’s not available. I have felt completely supported this whole season of Mom’s life and that goes a long way, my friends. It has made my life so much easier, and Mom’s so much more comfortable. I highly recommend hospice care to anyone facing a life-ending diagnosis, and the earlier the better.

For a few weeks now Mom has been mostly asleep. She’s been eating, but also aspirating her food. This means that she has trouble swallowing, and that a lot of her food is going into her lungs instead of her stomach. The signs of aspiration include a wet cough while eating, and afterwards, taking a long time to swallow, and runny eyes and nose while eating. The other day while I was there, her nose was running so bad while I tried to feed her and tears leaked from her eyes. She will open her eyes sometimes, but I’m not even sure she can still see. She does not focus on anything when her eyes are open. They mostly stay shut, even while eating. Her food has been modified to be like baby food – mashed up and mixed to a consistency that’s easier for her to swallow, but she is beginning to show a lack of interest in eating at all.

The body changes slowly with this disease. Mom doesn’t need a lot of calories. She’s completely immobile. But she does need protein to stay alive, and without eating it in her food, she isn’t getting enough. She has a sore on her bottom that isn’t healing, and won’t heal because she doesn’t have enough protein in her body to heal anything. This sore has been around a long time, and it doesn’t matter if they turn her from side to side, lay her down, sit her up or whatever – that sore isn’t going away.

She is retaining fluid. Her body can’t absorb fluid or expel it like it should. Which leads to random swelling. If she lays on her left side, then the left side of her body will be swollen, and same if she lays on her right side. Her hand has been swollen for a while now and we don’t know why, along with this hard swollen mass she has in her chest. X-rays were done and show nothing. Her body just can’t cope anymore. Lifting her by the arms has her grimacing but other than that she is very comfortable.

My brother will be here today. Perfect timing Roxie told me. Alarm bells ring and I know what that means. I talk to Tony, and I tell Baby Girl. She pulls a long face and says she wants to go see Granny with me today, but then she is quickly back to watching youtube videos and rejecting her bedtime. I believe she let go long ago, and while it will still be hard for her to say a final goodbye, it won’t cause any trauma like it did with Grandpa. As brave and strong as she is, she still won’t really talk about Grandpa. She says that’s her memories, and they’re special, and she doesn’t want to talk about him with anyone else. Especially not with her counselor, which is a shame but I can’t force her to do so. And while she love Granny dearly, she was forced to confront her mortality many months back.

I text my brother to let him know what we’ll be facing when he gets here. “I’ll be ready” he says. I know I won’t be.

I text some friends. They shower me with love and care.

She is fading. She will be made comfortable. Soon she’ll be dancing with my Dad in the Glory land. And I’ll truly have to live on without her.

Mom sleeps a lot. In fact she is asleep most of the time. Alzheimer’s has stolen everything from her, and has stolen her from me and my Baby Girl. When I go to see her now, she doesn’t even open her eyes. She is lost in a world that I cannot find a door into. Mom, I say, hey Mom, can you hear me? She opens her eyes slightly with the squeak of the bed as I sit down. But she doesn’t look at me. Hi Mom, hi – can you see me? Her eyes don’t focus and almost immediately they start to close again. I sit for awhile and watch a show on her TV. I put the Christmas decorations away.

Is there something wrong I wonder? I ask one of the lovely ladies when they think I should be coming to see her. Is there a time of day that she is more awake? They ponder but can’t really come up with an answer for me. She is asleep most of the time they tell me, but she’ll still eat. Even with her eyes closed, she’ll open her mouth for food. I wonder at this – the human body is designed to keep us alive. Why has her brain capitulated in every other regard? I think to myself that I don’t believe Mom will pass away due to anything other than her heart stopping. I don’t think she’s going to stop eating and starve to death, or that she’ll choke on her food and end up with pneumonia. I pray that it doesn’t come to that. My best scenario is that her brain will simply tell her heart to stop beating, and that it will be a peaceful transition. I also realize, that this of course means that the chances of me being with her at that time are slim. But I would rather have her go peacefully than with suffering due to hunger or pain. Even if I have to sacrifice being there in her final moment. Even though I know that they would not let her suffer. Pain will not come for her if the nurses can help it. I would still rather just have her slip away in her sleep – wouldn’t we all?

I read today about a new drug that is coming. That is being expedited by the FDA to hopefully be out in about 6 months. It has shown a 27% reduction in the advancement of Alzheimer’s over an 18 month study. It is meant for those who have been diagnosed early. It is based on the amyloid plaque hypothesis of Alzheimer’s – that amyloid plaques build up in the brain killing brain cells which leads to Alzheimer’s and death. Many studies have shown little to no effect of such type drugs and many companies have switched their research to gene therapy. All admirable and worthwhile research. I don’t care who gets it right, but I would rather NOT KNOW if I’m going to wind up in my Mom’s position. However, that being said, I do think I will know quickly if I am starting to show symptoms and will be first in line for any drug that will slow down the process.

If such a drug had existed at the time would my Mom have taken it? Would she have jumped on board? If we had caught on early enough – if she had let us find out what was wrong sooner – would a drug like this have slowed down the process? Would she have wanted this? I wonder. She absolutely HATED knowing she had Alzheimer’s. She HATED knowing what was going to happen and that she would be rendered helpless and dependent in the end. She called herself “stupid” and cried when she couldn’t make words come out of her mouth. She could not understand that it was the disease causing her distress, or at least she refused to believe it. I still don’t understand to the day why she couldn’t/wouldn’t be more gentle with herself. Let herself have grace. Let herself accept what was happening so that we could have tried harder to do something. So I wonder if she would even have tried.

The best she let me do was to put her on Prevagen, which is a supplement made from Jellyfish that is supposed to do wonders for your memory, and to have her eat hardened coconut oil every morning. (I couldn’t have done that – I hate coconut! But she was willing so we did it.) Eventually as memory failed the pills and oil became ignored… forgotten and discarded in the fridge. She wouldn’t let my Dad do her pills for her until it was so late that she questioned why Dad was forcing her to take anything at all. She was very suspicious and it took a lot of convincing to get her to take her pills. I still believe that if someone had put her on an antidepressant early enough, she would have been a happier person those two years. However, considering how difficult it was to get her to a doctor at all, getting her to take an antidepressant was, while not the least of our concerns, was simply not a priority.

I won’t post a picture of Mom now. Y’all have seen her slipped to the side of her wheelchair asleep and unaware. It’s only worse from there so Mom’s visual privacy will be honored by me. She wouldn’t have wanted anyone to see her this way, I know. At least I know she is comfortable. She is peaceful. She is unaware of my pain and heartbreak. My Baby Girl still loves her Granny, and still remembers her as she was. May this be forever true for her. I do not want her to forget.

Please don’t forget.

Things happen fast. Especially bad things. In the blink of an eye it’s gone, never to return.

The other day Tony was saying how fast his parents have deteriorated. I said to him “Babe, they are in their 80’s! It’s to be expected.” And he said “just a month ago she was driving. Now I’m taking them to Walmart and the post office.” I answered “I could say that a week ago my Dad was having a conversation with me. Then he died. Four years ago my Mom was standing in this very living room, helping me hang ornaments on the tree. Four years ago doesn’t seem to be a very long time. Especially when it feels like yesterday.” He acknowledged this with a heavy sigh. He knew it was coming – to be helping his parents to this extent. But he didn’t get to ease into it. One bad infection later and here we are.

I am finally at peace with what happened to my Dad. I know he is at peace, and that is all I need. I think that, even though it seemed to happen so quickly, it really was a long time coming in his opinion. I remember him remarking that he thought he only had a short time left, and he wanted to hire his caregiver back to make his life easier. So of course we did it. I never wanted to hear him talk that way, though, so I didn’t pay any attention. I should have. I was in complete denial the entire last couple years of his life. I wanted him to live. I needed him to live.

But I needed him to be at peace more. Now he is.

It’s not quite the same thing with my Mom, but the end result will be. I need her to be at peace. I want her to be at peace. And happy again. Smiling, dancing with Dad, seeing her own parents, waiting for me. Knowing that I will finally be ok without her.

Four years ago. Four years and a lifetime ago, but yet yesterday. She was in my living room. Standing, talking, laughing, smiling, patting my hand when I cried over a broken ornament. Baby Girl only four years old. Only four. Oh if only the hands of time could have waited a little longer. Slowly, steadily, my Mom as I knew her has been erased. It started with no longer being able to write a check or follow a recipe. Maybe it was when she stopped reading at night. Could have been when she no longer played games on her phone. Then the ability to know the time and weather. Gone. The ability to dress herself appropriately. Vanished. Knowing where the trash can was. Her bedroom, her bathroom, the toilet. Silently disappeared.

Finally the acknowledgement that I just couldn’t do it. The best thing for her was a care home. Choosing the wrong one at first combined with Covid-19 …. losing nine months of aptitude with my Mom. Overriding guilt and depression. Hospital stays for her, all alone, where she couldn’t communicate. Me being on the phone endlessly with nurses trying to explain and worried sick because I wasn’t allowed to be there. Watching the tears roll down her cheeks when I could be there, knowing there were many more when I wasn’t. Seeing the bruises and swelling from her falls. Her teeth getting knocked out, or falling out and nothing I can do. Trying the dentist with complete failure because Mom was terrified.

Hoping I was doing everything I could for her and feeling like a failure. Her ability to cope, her ability to use the bathroom, walk in a straight line without help, communicate appropriately. All slowly, slowly slipping away. Just slipping away.

And then all of a sudden here we are four years later. Mom no longer communicates at all. She sits. Or lies in her recliner or her bed. Still and silent. No more tears. No more pain. No more unhappiness. No more awareness. She doesn’t recognize me. She sleeps continuously. I go to see her and I hold her hand but that is all I can do now. As far as I can tell she doesn’t know if I am there or not. The silence kills me. Talk to me Mom. I miss you.

Erased.

As the second group of kids comes noisily in I steady myself for the next hour and a half of what is supposed to be math but really feels more like babysitting and crowd control. I notice that there are a lot of spanish speaking kids in this group and I’m a little worried, but I soon realize that they all speak English just fine. They are loud, yes, but a little more inclined to work. They are definitely more interested in learning and slightly more respectful. I even get a few minutes at the board where they are all quiet and I think hey! I’m getting the hang of this. However, chaos soon returns with them ALL eager to take a turn at the board. This group manages to do the first two worksheets a bit quicker than the first group and I pointedly ignore the word problems on the bottom of the page. I just feel like it’s too much to take on and I’m not at all inclined to try it with them with the possibility of a language barrier hindering us. I hand out the third packet, which is supposed to be done with a partner but somehow ends up with several kids all working together in different areas of the room. No one is left by themselves, however, so I let the failure to follow instructions slide. As long as they’re working, I’m happy.

As their time comes to an end I realize it’s raining outside and they will not be going outside for recess. I wonder what happens in this scenario. I soon find out. The groups switch around again and I get the third group for a half hour recess INSIDE the classroom. I think I was at least hoping for the gym. The boys begin to play an indoor game of catch with a hat, of all things, and devise a game where whoever catches the hat has to leave the group until the last person remains and that person is then out. I watch idly and am impressed with a rather tall kid with long hair that I take to be a girl. (I was wrong!)

After recess they all exit the room for lunch and I breathe a sigh of relief for the thought of thirty minutes to myself. I try for the restroom but it’s full of girls so I decide I can wait. I eat my peanut butter sandwich silently and text Tony. He asks if I’ve wanted to throttle any of them yet and I laugh. It’s just hard, I tell him. A lot of noise and activity for a person who enjoys silence. I should be used to kids, but the fact is I’m better with one on one instruction and of course, HORSES. Not children. I have already started counting down – you only have four hours left. Three hours left. Two and a half hours. Two hours and four minutes.

The third group comes in and right off the bat I mistakenly say “her” regarding the kid with the long, shiny, dark hair and I am QUICKLY corrected by everyone but the boy himself. Geez! They say, every sub does that! Well, I reply, you have long hair and I don’t know any of your names. An easy mistake. I refuse to be embarrassed. This set of kids is very bright. They get through the first worksheet in record time. I know we only have an hour before the Veteran’s Day assembly we will all attend, presented by the fourth grade music class. So we persevere and get through the second worksheet, again with ignoring the word problems on the bottom of the page. I am just about to hand out the third packet when the Vice Principal starts to call for dismissal to the gym for the assembly.

We all troop down to the gym and I am gratefully uninvolved in seating or disciplining anyone. I am anxious for a glance of my own Baby Girl, so that I can remember that I do, in fact, like kids. The third grade has been on a field trip that day and are late in on the game. They finally arrive and I see her little blond head almost right away. She is scanning the area and finally her eyes light on mine and she grins and waves. I feel something run through me and I think it’s just relief. Oh yeah, my gut says, there she is. She’s ok, so you’re ok too.

The noise in the gym is INSANE. I squeeze myself as close to the back wall as I can and wonder how long this thing is going to last. I half want it to last until it’s time for dismissal but I also don’t want to stand on that hard floor for that long. My feet are already aching and I shift from side to side trying to find some relief. Finally the music teacher calls everyone to order and we are thus subjected to a motley of songs God Blessing the USA and all the military. One song has a bunch of kids with drums and I’m just wondering what the beat is supposed to be because this surely isn’t it. Several girls are meant to be giving solos but try as I might I hear nothing at all. I couldn’t even tell who was meant to be singing. I find myself tear up a time or two as I witness the veterans in the audience and think of my Dad, who I am missing a lot this day. But I quickly rein it in, it won’t do for anyone to see my emotional side here.

Thankfully, the program ends after about half an hour and we all troop back to the classrooms. I get the homeroom kids back and we are not halfway in the door before one boy shoves another and a fight starts to break out. Hey! I say, cut that out! And they briefly move away from each other. However, the two boys are determined to let the other know who is boss and it doesn’t take long for them to be back at it. I know I am not supposed to leave the room so I take a kid and tell him to go get the teacher next door. She comes straight in and sees the conflict- what the heck boys?! She asks. She pulls them all out into the hall and I am grateful. There is a few minutes of peace as the remainder of the kids have free time until the bell rings. Wow, I think to myself. A scuffle on my very first day! And a kid that went missing! How eventful!

At dismissal the teacher from next door tells me that I can leave straight away, that they’ve all “got this.” I don’t wait around and argue – I am out! I practically run for the office and to find my kid. As I turn in my badge the receptionist asks “how was it?” Oh it was fine, I say. No problems.

I’m not lying. It could have been worse. I have a huge respect for teachers, and all the staff that make a school go round. I am tempted to say this isn’t for me, but I’m not a quitter. I’ll be back. With more information and armed with an attitude and maybe a little something something in my lunch box. (That’s a joke).

The morning started out like any other – getting Baby Girl ready for school. But this morning, I was making a lunch for myself as well. This would be my first day in over 12 years to be a substitute teacher. Before I met Tony I had subbed in the Aubrey school district and was fairly traumatized by the experience. But I think to myself that THIS TIME it will be different. I have a kid of my own, I know how they think, I am more patient now. This time I will like it.

We arrive at the elementary school only for me to be told I am not on the schedule. Almost elated, I say that I can go home if I’m not needed. They finally figure out that somehow I have been assigned to the High School. No, I say, I specifically signed up for 5th grade math. I’m not going to the High School. No worries they say! We actually do need a 5th grade math teacher so we’ll just fill you right in here. What happens to the job at the High School then I ask? The receptionist says Ah! We get a little selfish about subs – you’re here so they’ll just have to cover that class. She says it with a little grin and a shrug, not at all concerned. Truthfully I am not that concerned either, there’s no way I’m going to the High School so I take my ID badge as they explain it is a bi-lingual class. But not to worry! The kids will help you. Most of them speak english anyway. MOST of them? Gulp. Turns out spanish speaking students were the least of my problems. There’s another lady behind me waiting to be helped and through this whole process the look on her face tells me that I am clearly insane. She looks terrified FOR me. I wonder what my face looks like.

I get down the hall just in time for the first bell to ring, I haven’t even read the instructions! And the key to the door is very tricky. I am not panicking, I am not panicking, I say to myself. I can do this! Hear me roar! As the kids come in and drop their binders everywhere I try to quickly scan the instructions left for me, there are three worksheets to do, two of which we are to do together on some sort of new fangled computer whiteboard screen which I have no idea how to use. At least I can do the math I discover with some relief. What would the sub do who had no idea? I figure the kids will know how to do the whiteboard, and they do. Only every single one of them is jumping over themselves ready to show me.

One girl comes in and with her arms outstretched tries to give me a hug. This theme continues throughout the day. The second time it happens I say, No thank you, I don’t need a hug. The third time I say Wow you really like hugs don’t you? And the fourth time I just cave and freeze until it’s over. She’s a flighty sort of girl, very tall and kind of not there. There’s plenty of boys that are obviously going to give me some trouble and one girl that is falling over herself to be my helper. She asks me to put a bow in her hair. I see that there is the largest knot in the back of her head. She says it just stays there all the time. I wonder to myself about her home life. I wonder about that knot the entire rest of the day.

The noise in the room is cacophonous. I raise my voice and tell them all to take their seats. I am half expecting one of the boys to raise his chair and say “Where should I take it?” They have specials first thing, which will give me a chance to figure out what to do for the day. I walk them down to the gym and gratefully leave them there. I have an hour of peace to kill. I sit down and carefully read through everything. Apparently these classes act as “pods” and there are three classes in a pod. They switch from one subject to another through the day. So I will have three different sets of kids – the first set was my “homeroom” kids – and I will have to teach math for an hour and a half per set. I look at the math worksheets more carefully. The first two we are to do together on the whiteboard computer thing. Now wouldn’t it be nice if they all sat quietly in their seats and raised their hands respectfully and answered the math problems whilst working diligently? Baby Girl and I read the Little House on the Prairie books and there is a lot these kids could learn from the way kids behaved back then.

When I get them back and we begin, that picture of saintly behavior quickly fades to black as I get a bunch of raucous kids kicking chairs, tapping feet, falling out of chairs, doing artwork, passing notes, getting up, falling down, softly singing annoying songs and doing everything short of actual spitballs. There is one girl that you can immediately tell is drama. I don’t know how it starts but all of a sudden she wails “MY PARENTS ARE LEAVING ME” and is bawling at her desk while another student scoffs and says something unintelligible to which the girl turns around and screams “YOU DON’T KNOW, YOU DON’T KNOW ABOUT MY HOME LIFE.” Just at that moment the vice principal opens the door. Wow, she says, looks like I came at just the right moment. I have no doubt that the girl is dramatizing and looking for attention, but she is in tears, so the assistant principal takes her and her work down to her office for awhile. I am not sad to see her go. The other kids take no notice and simply go back to their level of noise and activity they were previously at.

It takes FOREVER to do these problems. I am not sure what the purpose of doing them together is, as some of the kids are bright and quick and bored while others are struggling. It seems it would be easier to move around the room offering help where needed? But again, that would assume a level of quiet and diligence that is sadly lacking. To get their attention I try turning the lights off and just having the computer screen to see by (which is light enough) and I tell them that if they can be quiet I will leave the lights off. It fails miserably. Some of the kids, of course, are pleased with the lights off and try to make the others shut up. To no avail. It is a lost cause. These kids could do with a little more “sit downs” and “shut ups” in their lives. Then again, maybe they are all angels for their regular teacher but I doubt it.

By the time we get to the third worksheet which they are supposed to do with a partner and on their own I am sweating and ready to quit. My brain has had enough with the noise. I am sharp tongued and thisshort of lashing out. One boy takes himself off to a corner to pout when he gets a question incorrect on the board and I have to call someone else up to do it. Another boy sits on the floor in front of the computer screen the entire lesson. That boy plays catch with his water bottle and I finally snatch it away in exasperation. Every single one of them asks me if they can go to the bathroom. The boy who had been pouting asks if he can go wash his hands, as they are all sticky. How?!??!? I don’t ask, just sigh and say yes. That same boy is found to be climbing the walls in the boys bathroom about 15 mins later. His worksheet has somehow found it’s way to the learning lab. I have to call down to the office for someone to go find him, as he has disappeared from my classroom.

It would be funny…. might be funny…. in hindsight…

By the time this section of math is over and we change classes, I am wondering if it can get any more difficult. This group has not impressed me, but I have impressed me – I managed to keep them all alive and the lost boy was found so I feel it’s a win? I pop open a Diet Coke and take a huge swig wishing it was just a tad bit stronger…..

Stay tuned for part 2.