Your Story

Hey Mom, I need to talk to you. The other day I ran into a friend of mine and she made a point to tell me that the words I write, in these blog posts, really mean something to people. That they touch the right people. She is suffering, too, Mom – her own mom also has Alzheimer’s. She teared up when she told me that and I was humbled, that my words could so affect someone else. I didn’t know how to respond – I’m not great at expressing my feelings out loud.

But it moved me, all the same. I’ve written these blog posts for myself really, to let out my emotions and grief. But, Mom, maybe I could do more. Maybe I could tell the WHOLE story. The story of you. Your story, your fight, your memories. I could put it all down on paper and maybe someone would read it. I’ve long thought about this, and have said to close friends and family that I intend to do it. Yet something has always stopped me. At first I thought it was my own grief, I find it hard to write when I’m mired down in depression. But I know it is something more. It is your dignity that stops me. This is your story after all, not mine.

You would hate it, Mom, what I want to write. You would be embarrassed and upset, and angry. You did not want this to happen to you. You made us all keep it a secret for a very long time. When you could no longer tell me how you felt I took it upon myself to start telling the story in these posts. I did it for me. I did it so that others would understand. So that maybe someone else wouldn’t feel so alone and discouraged. So, you see, I have already betrayed you.

I want to tell the gritty, dirty, terrible details. I want to start at the beginning and tell the truth of how this disease slowly steals your mind, your memories, your abilities and your life. I want to tell how it affects your family, how Dad couldn’t stand your pain and how I wanted so bad to advocate for you every step of the way. How I wanted to be sure I never let you down, and how I both succeeded and failed. I want to tell about your feelings, and my feelings, your grief and my own, your fear and mine. I want to tell your history and all the skeletons in the closet.

What I need, Mom, is your blessing. I need to feel that you are ok with it. That maybe you would understand, and want to help others, too. When you were first diagnosed I could find no books, no articles, no anything that really helped me understand not only what was happening at the time, but what would happen in the future. A few personal stories in books, yes, but nothing that went in depth, nothing that shared the deep, agonizing loss of both of us. Nothing that shared the mortification of losing your abilities such as going to the bathroom, knowing where the toilet even was, or the trash can, or your bedroom. The effects of sundowning, and the terrible terrible guilt over leaving you that first day in the memory care facility.

Through it all we have never lost each other, although I myself feel horribly lost from time to time. When I go to see you and lay my head on your shoulder I can feel you with me, truly with me. That physical connection has never been lost, that emotional connection still runs strong. You might have forgotten who exactly I am but I know you will not forget that I am important to you. I don’t know exactly who I’ll be when you pass, the pain that will be etched on my heart when I can no longer feel you will be very hard to bear. I guess my point, Mom, is that I want to tell your story so that you and our story will never be forgotten. So that it might help others feel not so discouraged in their journey with Alzheimer’s. And because your story matters.

I suppose I will have to go on without your blessing and hope that you will forgive me. Someone has to tell this story. I guess that someone must be me.

I am a strong woman because a strong woman raised me.

The Face of Alzheimer’s

I’ve been dreaming about my Mom a lot lately. In one dream she was having trouble making a sandwich and instead of asking for help she just gave up. I discovered the bread and mustard and everything out and asked her if she had eaten and she replied “No! I couldn’t remember how to make one.” She was upset and I told her it was ok to ask for help. I sat with her and made it for her while she said “but I should have been able to do it.” And I said of course she should, and but that we all need help sometimes.

There was a lot more to the dream that I don’t remember – this was the part directly before I woke up. I remember how flustered she was in the dream and how she said she guessed she needed a “big sister” to do it for her. I am not a dream analyst and I have no idea what any of it means. But it’s the fact that I can talk to her in these dreams that make them so incredible. Obviously in this most recent dream she was at the forefront of Alzheimer’s. But she could still talk to me. In reality, and oh there’s a lot of stories I could tell, I remember the day she put the egg shells into a cupboard because she couldn’t remember what she was supposed to do with them. The utter confusion as she held the egg shells. My heart wrenching because I knew I could not tell her to put them in the trash can. Waiting until I could move the eggshells when she wasn’t looking.

If you want to know what Alzheimer’s looks like, look closely at my Mom’s face. She is the face of Alzheimer’s. This is the toll it takes. The vacant expression, the staring off into space – the listlessness and the leaning. Look at her eyes. She no longer sees the world around her, she can only rarely focus on anything. If she manages to look directly at me sometimes I’ll still get a smile. Mostly not. Maybe she’ll say a word or two to me, maybe she won’t. Today I showed her a picture of my Dad, all dressed up in his Army uniform standing in front of a flag. Who is this I ask, putting it carefully in her line of vision. Who is this? She glances at it before her eyes slide away. I don’t know she says clearly. You don’t know who this is? I ask again. She mutters uh-uh. Usually I don’t do this to her. I don’t ask the hard questions and I don’t try and make her remember.

But today I was curious. I set the picture down without another word and then I looked at her and said “Do you know me?” I asked it twice and she just looked away. No response. Nothing in her eyes. So I sat down and read to her, the storybooks she used to love. Where The Wild Things Are, Tikki Tikki Tembo, Strega Nona. I did all the voices and she was interested… I think. She didn’t try and look at the pictures. She didn’t watch me as I read. But she didn’t fall asleep either, so I’ll take that as a win. One of the care ladies stopped by and I think was sorry to have interrupted but I kind of wished she would have stayed and listened too. It made me have the idea to do a story time like my Mom used to do. So I messaged the Director and asked her if I could do this for the residents sometime.

The time before when I visited, Baby Girl was with me. We sat outside for awhile and decided that it was too hot so we took Mom inside, to her room. Baby Girl and I decided to “organize” Mom’s room. It’s always tidy but Baby Girl went through the postcards that Mom’s best friend Panchita sends weekly without fail and decided which to hang on the wall and the door. I went through Mom’s closet and found a ton of stuff to weed out. We thoroughly enjoyed ourselves and Mom sat and took it all in. She never said a word but her eyes were open the whole time and she did look around a lot. We talked and laughed anyway. Mom enjoys the commotion – she likes to listen to people chatter around her.

Thursday July 22 is Mom’s 76th birthday. The day before I am throwing a party for her. It’s going to have live music thanks to the Director of the facility, and grilled salmon and lovely potatoes thanks to some of the ladies that work there. I’ll bring the decorations and the cake and all of us, Tony included, are wearing purple to honor my Mom. All the residents and caregivers are invited. It’ll be a great day and I’m really looking forward to it. You might wonder why we would make all this effort for someone who will not know what is going on – but I tell you if I can make her feel the love that surrounds her then that is what I’m going to do. I’m going to celebrate the heck outta my Mom! She deserves a party. We all do. Alzheimer’s is an ass kicker for the entire family so Alzheimer’s awareness is the theme – purple and butterflies – because it needs a cure badly. Even some of her oldest friends are coming. Friends who I hope will understand that what they see is not the lady they knew, but that somewhere deep inside she still recognizes them.

I pray that I never have to be the face of Alzheimer’s like my Mom is. I pray that what she is suffering is not in vain – that if I can somehow make a difference that I will. I pray that my Baby Girl doesn’t have to go through this twice. That she’ll be around to see the cure. So give us hope on this day, this day of Alzheimer’s awareness. Thursday July 21st wear purple for my Mom and thank your lucky stars or your merciful God that your brain is healthy and strong.

Memories matter. And in this family, no one fights alone.

Independence Day

I read. I suspect you know that about me already. Recently I have read “Get Out of Your Head” by Jennie Allen, “Talking to Strangers” by Malcolm Gladwell and I’m currently reading “Raising a Strong Daughter in a Toxic Culture” by Meg Meeker, M.D.

This past year has been extremely challenging as I watched my Dad’s health deteriorate and then watched him pass away, handling all of his affairs along with my grief, and not being able to draw comfort from my Mom, who has no idea he has passed, and probably doesn’t remember him at this point anyway. When I go see my Mom I keep a happy face, a smile and encouraging words. I wonder if she knows how fake I’m being. How anxiety grips me before and after each visit, how guilt and sadness can bring me down for the rest of the day. She searches my face sometimes as if she’s looking for the me she used to know. As if this person in front of her, while very welcome, is a stranger she can’t quite get used to.

And yet I do draw some comfort from her. Just to be able to still touch her face, hold her hands, and breathe her in. She’s still here and that is everything. I know the day is coming when even this will be gone from me. I realize what an important role she has always played in my life – my parent, my cheerleader, my coach, my counselor, my rock and my friend. She always had my back, no matter what. Deep conversations and deep emotions never put her off. We laughed and we cried and we loved and I already miss that part of my life more than I can communicate.

However, in reading these books and doing a lot of soul searching, I have come to realize that now I must be all of this to my Baby Girl. It’s her turn. Mine and her’s turn. Of course there is still a good dozen years before we can naturally morph into “friends” but my job right now is to set the stage for that eventuality. I need to set aside my fear, my grief and my anger and focus on what she needs from me. I’m afraid I haven’t done a very good job of it as all these huge emotions took their toll on my mental and physical health.

I’m ready now. Ready to teach her that I love her no matter what, that she’s important, not just to me and her Daddy, but to God. I’m ready to show her that God created her through love and that He intended for her to be my daughter. I believe that He sent my Baby Girl to comfort me through these times and to let me know that it doesn’t end with my parents’ deaths. They set the stage and it’s my time to act. Everything that they taught me, everything that they were – it’s time to pass all of it along to her.

I have to start with my own health. Just last night I caught myself saying “I just feel fat.” And Baby Girl not only heard me but commented “you always say you feel fat but you’re perfect just the way you are.” She loves me as I am, and so does Tony and so does God. That’s pretty powerful. Instead of feeling fat and discouraged I will feel grateful and blessed. God put these people in my life, along with some great women friends, to continuously remind me that I am loved, and in turn, I will love as well. BUT I will also treat my body better – like the temple that it is, and I hope that I will be able to teach Baby Girl to love herself exactly as she is.

She’s 8 years old now, and I realize also that I will, in fact, miss these days. If I don’t get out of my head and into her life, I will miss it entirely. And I will regret it. She’s an amazing person, full of love and laughter and sensitivity and emotion and imagination. She’s a lot like my Mom. And a lot like me. Last night I sat and watched the complete rapture and joy on her face as we watched the fireworks at Lone Star Park. She has never seen real fireworks before and she was super excited and enthralled with it. The last song they played was “God Bless the USA” and I teared up as I watched, and my husband put his arm around me (this was the song my Dad and I danced to at my wedding). I looked up into those fireworks and at the joy on my daughter’s face and I knew that I had to let her live in a world of happiness and peace and total love. Not grief or sorrow or anger. My Dad would want us to be happy. Everything he ever did was for my Mom, my brother, me or his grandkids.

Today’s the day. Independence Day. I will live for you, Baby Girl, and for me, and for God. We will take this life by storm and we will not back down. I’ll be here for you, until God calls me home. I pray that you will be strong enough to face whatever life throws at you, including having to put me in a home if I succumb to dementia. I pray that I am strong enough for you. I promise I’ll do my best. And I promise that my heart will never, ever forget you. I know my Mom’s hasn’t.

Happy Independence Day everyone. I hope you find peace in your heart and love and laughter in your home.

Pray for Rainbows

As the months go on since my Dad’s death, my grief gets deeper and more insistent. Grief for my Mom has overwhelmed me for years, and with my Dad’s death I feel like I have no one left to talk to. There’s something about the way you can talk to your parents that just doesn’t transfer over to anyone else. It’s a selfish type of talking – knowing that your parents will listen and support you in whatever you say, knowing that they will have your back and will be there for you no matter what. At least, that is what I had with my parents, and when it was ripped away so suddenly with my Dad, and so slowly with my Mom, I found myself floundering and drowning in anger and sadness. I was in no way ready to lose them, at their age it just seems cruel. They are only both 75, though Dad would have been 76 now. I prayed for years that they would be around a long, long time. I know that my plan is not always God’s plan but still I find myself angry all the time.

I did not plan to raise this child, my Baby Girl, without them. I did not anticipate that I would have to. I assumed they would be there, rejoicing with me, and groaning with me, and celebrating each milestone and achievement. I imagined stories told of when I was young, comparing her attitudes and personality to mine. I imagined Mom just laughing and saying “let me have her for awhile, you need a break.” I imagined Dad with his Fu Fu wrapped around his little finger, letting her get away with murder and yet demanding his respect at the same time. I imagined her growing up with them so close, so much a part of her life. I can still see all that, in my mind’s eye. I am wild with anger that it won’t be so.

I am angry that I have to face this world alone. I cried tonight over Uvalde. How can I raise my Baby Girl, how can I be happy in a world where such evil exists? I am grateful that they don’t know what happened today. I am gutted with grief for the parents that have learned today that their child isn’t coming home. And then I think to myself, how do I deserve to be unhappy? I should not feel this anger and pain – these parents today have it so much worse than I do. I was loved. I was cherished. My parents were loved and cherished. They did not die when I was a child, I did not die when I was a child. I don’t deserve to be this upset. There are so many in the world that have it worse than I do.

Even before today, before Uvalde, I have thought that I am not worthy of the pain I feel. I try to hide it. I talk to people every day with a smile on my face, with my feelings deeply buried. I am tired, I’ll admit that. I take naps – I try to hide from the grief. In sleep I can escape the pain. In my dreams I see my Mom, sometimes without dementia but 99% of the time she is somewhere along the path of Alzheimer’s. I never dream of my Dad. Not once. I wish I would. When I’m awake I eat to fill the empty space – I try to make myself be healthy but I am fighting a losing battle right now. My grief is so overwhelming that I feel like I can’t control what I eat. I am too busy trying to make it through the day without taking my anger out on my husband or my daughter. Wine numbs the pain, both physical and emotional. I never get drunk but I’d be lying if I said it didn’t help, and offer comfort in a time when I will take any type of comfort I can get.

The other night I was sitting in Baby Girl’s room while she was trying to fall asleep. I was sitting and singing to her, after she had had a hard day. I have to resort to the only songs I know all the words to – Twinkle Twinkle Little Star, Rock A Bye Baby, Rudolph the Red Nose Reindeer, Jingle Bells, and finally, Amazing Grace. As I sing I think about her pain, and I wonder how I can ever help her if I can’t even help myself. But then I think, maybe this is what she’ll remember. Maybe she’ll remember how hard I tried. That I was willing to sit with her in the dark until she softly whispers “I’m ok now.” Maybe she will remember how much I love her, so much so that I kill myself trying not to show her how sad I am. I know sometimes I fail. She sees me cry. She wrote me a note once that said “You are the best Mom I ever know. When you cry my heart breaks.” And I want to tell her ditto, Baby Girl, ditto. She exudes love and empathy and caring and self-resilience. I think she’ll be ok in spite of me.

With God’s help maybe I’ll be ok in spite of me, too. In time maybe there will be true happiness again. With wine, good friends, good clients, a loving husband and a child that needs me, maybe one day I’ll look back on this time and think “Wow, I am sure grateful I made it through.” I pray for this. I pray for peace in my heart. I pray for joy. I pray for a life that I think is worth living. I am not worried about Heaven, I am worried about here, now, my earthly time. For all of you who are struggling with something – with grief and pain and unbearable sadness – I pray for you, too. I pray for rainbows.

Thoughts about Heaven


Do you ever think about Heaven? What it is really like? I think most of us do, from time to time. The concept of Heaven has been on my mind most days lately, as I struggle to make sense of where my Dad is, where my Mom will be. What does Heaven look like in your mind’s eye? I’m curious. Do we all have the same thoughts of beautiful clouds, angels with wings, golden roads and supreme peace? But here are some more thoughts…

When Dad died I expected to feel something. Something serene and holy. I did not. I saw no light surround him, saw absolutely nothing out of the ordinary. I’m not even sure we were truly there when he passed. I think he might have already gone while we were all looking the other direction. It was only when the nurse said something that we gathered around and held his hand and talked to him. But I honestly think he was already gone.

Did he look back? Did he see us with his body? Did he have any regrets? Any time for regret? Did he see a light? Was there an angel there? Did he meet God right away? Or Jesus? When he’s in Heaven does he still have a body? What does he look like? Young? Or is it just a presence that changes depending on what other souls he encounters? Maybe with his parents he’s a child again. Maybe with his friends that have passed he’s in his 20’s. Maybe he has met the child I miscarried. Maybe he held that baby in his arms as the old man he was. When Mom joins him, will they be young together again?

After he died a friend of mine sent me a book entitled “Many Lives, Many Masters” by Brian Weiss. She hoped that it would bring me some peace. In this book the author insists that, through hypnotherapy, he brought a woman back into other lives she had had throughout history. Reincarnation. Many, many times. The woman found peace through hypnotherapy and by visiting these other lives she was able to ease all her anxieties. Each time she was “between lives” she was just basically floating in peace. Not in a Heaven as we know it. But just floating. The “Masters” came to talk through her, and explained to Dr. Weiss that there are many things we must learn on earth and until we do, we will not be in the presence of God. We will just keep repeating lives on earth until we learn all our lessons.

This book brought me MANY more questions than answers. My friend meant well but honestly the book unnerved me. I had never thought about reincarnation before. Never considered it as a possibility. However, now that I have read about it, I MUST consider it. Just recently I read a story about a little boy that ran into a man’s arms in a restaurant and the man held him and rocked him until the little boy fell asleep. A complete stranger. But the little boy seemed to “know” him. When my Mom met Tina, there was a definite kinetic energy there. It was almost as if Tina was my Mom’s mom in another life. Like she recognized her and had been waiting for her all her life. I’ve never seen her respond to anyone like that before. And maybe it’s just the Alzheimer’s, but whatever it is I’ll take it. It almost hurt my heart the love was so strong.

There are many, many stories like this. If you read and look closely you’ll find them. What does it mean? Is reincarnation real? Do you really just float in space between lives? Part of me does not want that to be true at all. I want to think of my Dad in an actual Heaven, rejoicing at the feet of God. I want him there waiting for me, and for my Mom. I want to know he is at peace. I don’t want him, or my mom, to suffer through any more lives. Because life IS suffering, even if you have a fabulous life, it is never going to be like living in the Glory of God.

The other day I was out mowing the big paddocks and I thought to myself, can me Dad smell freshly cut grass in Heaven? A completely random thought, but not unusual for me these days. So, can you? Can you smell and think and feel? I don’t mean feel emotionally, but feel tactically. Maybe not on that one. Eternity and Heaven are very difficult concepts to grasp. I don’t think any of us are actually capable of it. Even with these stories you read, like “Heaven is For Real” and all these other tales of people coming back from Heaven to tell us about it … I’m skeptical. Not of Heaven existing, but in what form? Maybe it is different for each of us. But the most important thing there is, is to be reunited with the souls you connect with. And if that doesn’t happen… because you have been reincarnated …. well when will I get to see my Dad again? What if he’s not there waiting for my Mom? What if he’s already “gone on” to another life?

I did not want to think about all these things. I love my friend, but sometimes, you just want to think about things the way you think about them and leave it all well enough alone. The book was enlightening. And frightening. However, I still can see my Mom’s face when she sees Tina’s face and I wonder ….

Changes in Latitudes


Nothing remains quite the same. Mom’s condition worsens with each passing week. These days it’s a toss up whether she’ll know me or not. In the afternoons, after lunch, they lay her down to take pressure off her behind – they’ve had to adapt their care to her changing needs. She cannot move her body anymore, can’t voluntarily move her legs or her feet – though they tend to twitch a lot.

I arrive today after lunch and she’s resting, her eyes are closed. I lean over and say Hi Mom, how are you? She opens her eyes but there is no recognition there. She is always now looking to the left, as if she sees something no one else can see. She meets my eyes briefly then looks off. Nothing in her face changes, no crinkling of her eyes, not a glimmer of her mouth turning up in a smile. I know that she doesn’t know who I am. But I say “I’m so glad to see you” and I smile and reach for her hand. I ask her if she wants to go outside for awhile and she manages a yes. The ladies come in to dress her and put her in the wheelchair while I wait outside in the hall. I can’t bear to see her inaction in action – I can’t bear to see her so terribly helpless that she has no say in what anyone does to her now.

Once she’s ready we head outside for the sunshine and the wind of a 80 degree North Texas afternoon. We walk and I talk to her, of things she may or may not understand. I have no way of knowing if she comprehends what I say. We go around the building and I remark on the snowy white buds on the trees and how beautiful they are. They’re gorgeous, aren’t they Mom? I say. She doesn’t respond. We stop by my new car and I say “look Mom, look at my car – isn’t is beautiful?” She makes a sound I can’t comprehend but I’ll pretend she’s saying yes, yes it is beautiful. I kneel down next to her and stroke her hair and say “are you glad to see me?” She says yes, I think. I say do you know me? Am I Julie, your daughter? She looks at me but there isn’t anything there. I wish I knew what she is thinking, does she think at all? How would anyone know?

I choose to believe she understands me at least. I choose to believe she’s there somewhere, but I do wonder if I she knows when I am NOT there. Like last Friday, when she recognized me and smiled hugely and listened to me talk – when I said I’d be back soon – did she know that I meant it? And now, when I come back and she doesn’t remember me – will she know later that I was there? Will she wish I was there? Will she miss me? Or does she truly live only in the moment?

I stay about an hour, first trying Willie Nelson songs, then switching to Jimmy Buffett. Today nothing captures her memory, nothing makes her react. I sing anyway and hope she’s not completely put off by my voice. Max is out there with us, and I worry about him. I see my Dad in him – old and weak, but mentally still sound. I hope he has plenty of visitors. We chat for a minute, but then I let him enjoy the sunshine while I sing, badly, first Good Hearted Woman, then Highwaymen, then moving on to Cheeseburger in Paradise and Boat Drinks. I ask Mom if she remembers us going to New Orleans. There is a tiny spark there and I notice. I hope it means she does.

I can’t stay too long – it hurts my neck and back to lean forward so I’m close enough for her to see me and hold my hand. I am unsure if she’s actually holding my hand – it’s quite a grip – or if it’s just that her hands are turning inwards so forcefully that when I slip my hand in hers she simply can’t let go. It hurts my heart to watch this agonizing decline, but I can’t abandon her. I absolutely won’t. Even if I only stay an hour at a time, I’m going to keep coming as often as I can. I don’t want to regret anything when the time comes. I want to know that I did everything I could, everything I could do so she knew I loved her more than anything. Even if the time I’m there I could absolutely be getting a million other things done – there’s time for that later. There’s going to be time for me that she won’t have. So I sit and I stay as long as I can stand it. She can’t talk to me, and today she isn’t even looking at me, but I stay nonetheless.

Maybe next time she’ll know me. Maybe she won’t. But I’ll be there anyway.

Mom and I used to adore Jimmy Buffett. I might be terrible, but I’ll keep singing and remembering her there with me. Changes in latitudes, changes in attitudes, nothing remains quite the same. With all of our running and all of our cunning, if we couldn’t laugh we’d all go insane.

Smoking


Sometimes I wish I smoked. A terrible habit, to be sure, but it just looks so peaceful, relaxing. God knows I could use some of that. Seems like it’s just the thing to take a bit of pressure off. A physical time-out. I often imagine that I could do it. A big inhale and a looonnnggg exhale, letting out all the worries of my mind.

I’ll never do it of course. You don’t grow up with two parents who smoked – in the house, in the car, everywhere, and think smoking is cool. At least I didn’t. I hated it. I would wave my hands dramatically in front of my face and act like I was dying of secondhand smoke inhalation. Every time one of my parents lit up I would move a bit further away. I couldn’t stand the smoke, the smell – the way it lingered on clothes and breath. My eyes watered, my throat closed up.

No matter how I tried I could never convince them to give it up. Mom tried – she tried a LOT. But it never took long for her to pick up one, then two, then multiple cigarettes a day. Alzheimer’s is the only thing that worked, ironic as that is – she forgot she was addicted. She forgot the pleasure, the sensation of holding something in her hand, the nicotine rush. She forgot the relief it gave her.

Dad told me how Mom used to drive around Austin, a lost soul, huge sunglasses hiding her pain, smoking in her yellow mustang. Her own Dad had died and she didn’t get on with her Mom. She was aimless and heartbroken. I can see her now… I identify with the person she was then. I can see how smoking would take some of the pain away. Austin was, of course, a different city back then. Women smoked and wore things on their heads while driving. Bizarre, but true. Part of me wonders what it would have been like to live back then. Getting lost in your car, instead of on your smartphone.

Almost 15 years ago they finally decided they would no longer smoke in the house. Due to the birth of their first grandchild they vowed to make the house smoke free. They kept their word, and only smoked out on the porch or in the garage. They painted the entire house, ceilings as well, and the hazy, yellowed ceilings and walls came to life again. The garage was always fuggy with smoke and I could never understand how they stood it. My brother would go out there to ruminate with Dad, but I never could. I’d open the door a half inch just for them to be able to hear me, then wait for them to come in.

We’d be playing dominoes and there would be smoke breaks. Get a beer breaks. Bathroom breaks. Get dessert breaks. I always leaned more towards the dessert breaks than anything else. Mom was famous for providing whatever food my brother and I desired on these visits. Chocolate pie, cheese balls and fritos, cheesecake, chocolate cake, peach cobbler, you name it she had it. Anyway, I digress into memories….

Anytime I am stressed – which is the majority of each day – I think about how they smoked. I think about my Dad’s last years. The last of which he did not smoke again. He was forced to give it up due to his failing health. But he never stopped hankering for one. He never got over the mentality of it. I donated his last box of cigarettes to the homeless shelter at the Episcopal church in Denton. I still wonder what they thought when they saw that box of ciggies in with all the clothes. I wonder if they actually handed them out. I wouldn’t normally be the person to perpetuate a terrible habit but I couldn’t help but think how grateful they’d be….

Stress is a terrible condition. When Baby Girl gets to me and pushes all my buttons I just want to take a smoke break. I want to say HEY GIVE ME A MINUTE. Smoking isn’t the answer of course, neither is wine – I’ve tried. But I completely understand the concept. A few of Mom’s caregivers smoke and I often wonder if she enjoys the smell lingering on their clothes, if it makes her feel comfortable and takes her to “back when.” She doesn’t seem to mind it, certainly. I told one the other day they should let her have a drag – I wondered if she’d remember how. Of course we didn’t do it, but I knew Mom was thinking about it too.

I’ll never smoke, of course. But couldn’t I just have a little smoke break every now and again?

Saying Goodbye


Today was a hard day. My Dad’s 76th birthday. A day full of too many silences. Too many wishes. Too many empty spaces. In truth he’s not 76 at all. He’s forever 75. I’m sure in heaven he’s young again, young and carefree and full of piss and vinegar. Maybe the age he was when he started dating my mom. Maybe the age he was when he went to Vietnam. When he went to Europe for the first time – a young buck in a brand new, sophisticated world. Maybe the age he was when he flew his first helicopter, or maybe he’s in his 30’s – secure and happy with his life and chomping at the bit for whatever is coming next.

Today my Baby Girl and I went to his house. The house he lived in for the final three years of his life. Three years that he was miserable, I know. Three years that I’m sure he wished he could’ve just skipped altogether. He was happy in Winona, he didn’t want to leave. He had to leave, for Mom, but he wasn’t happy about it. So I never really feel his presence here, in Pilot Point. I think I’d have to go to Winona for that. But still, I felt it important to have some sort of closure, some Goodbye, for Baby Girl. The closest I can get to his presence is sitting on the back porch, watching her play. He loved to watch her play. But if I look to the left he’s not there. It’s just an empty space, where he should be.

And as it turns out, as I am getting a High School in my backyard, he would have been getting a Middle School in his. And how amazing it would have been for Fu Fu to be able to go to his house after school each day. We talked about that, her and I. We wished it had been so. We played some on the playscape and then collected rocks to take home for the roses. We went through the house room by room and imagined how it was, and I thought about how it will never be again.

After that we went to see Mom, and we brought her outside to enjoy the weather. Mom watched Baby Girl – her eyes followed her around – but other than that she was very unresponsive. I held her hand and played Willie Nelson songs for her, in honor of Dad. I told her it was Saturday, March 5th. No response. We listened to Seven Spanish Angels, A Good Hearted Woman and Whiskey River with no response. I kept hoping for a spark, but there was nothing today. Pancho and Lefty and the Highwaymen fared no better. She said she was happy I was there but other than that I got no words from her today. She often looks at me now like she’s wondering who I am. It doesn’t sadden me, I know she would know me if she could.

On the way home we stopped at Brookshires – I wanted to buy a piece of chocolate cake to put a candle in. Baby Girl argued for the bright blue frosted cupcakes and finally I gave in and let her make the call. Call me sentimental I guess. I think I was hoping to feel something more akin to peace than to sadness. But it didn’t work. It just made his absence even more painful to bear.

Saying Goodbye isn’t something you can just do. You can call it goodbye, you can call it closure, you can call it whatever the hell you want but in the end it’s just another way to remember the reason you’re sad. Maybe in the long run I’ll be glad I did it this way. It’s hard to lose his house. The last place I saw him alive. The place where he died. The place where he tried so hard to be everything we all needed him to be. Until he just couldn’t anymore. Even though Dad isn’t there in any way, I will miss that house. Not as much as I miss the one in Winona, but I’ll miss knowing he was there. Knowing your Dad was THERE is the hardest thing to lose.

I might’ve said goodbye to your house today, Dad, but you’ll never be gone from me. It’s my mission in life to make sure that Baby Girl remembers you and Mom. That she treasures who you were and how much you loved her. As long as she has me, she’ll also have you.

Enjoying the Sunshine

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

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

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

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

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

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

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

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

Merry Christmas in Heaven

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

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

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

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

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

Fast forward to this year.

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

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

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

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

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