Devil’s Backbone (Again)

Some shots from Devil’s Backbone…

Also, had this on my mind tonight:

You don’t know what someone is dealing with…what they’re going through. Sometimes a person can be confident and also anxious, look healthy but be sick, look happy and be miserable, look good but feel ugly, act hopeful but feel hopeless, smile and be broken, or never smile at all and be happy… You don’t know. So unless you ask, don’t judge. Don’t assume. Sometimes a person you see every single day or think you know very well can be fighting battles you know nothing about.

Be kind.

Excerpts from counseling chats, #1

The last few years culminated into feeling like a dream for the last several months – I have literally survived, I realize now, by living in a whole non-reality, on autopilot, and there are very few everyday experiences and mundane daily tasks that I do now without being in an almost confused state. Like, “what is this?” or, “how did I ever do that…I don’t remember…”

I am beginning to realize that I actually exist – and can exist – as a being separate from continuous worry and fear about/for my mother, and I have completely forgotten how to be that person. I still wake up some mornings, if I’m not already at my moms, with this programmed state of, “I have to go check on my mother,” being the first literal and conscious thought in my head. Even if I stay there, which I haven’t been able to peacefully do yet, I find myself in the mindset that I have to get up every few hours to check and feel guilty when I wake up and think I forgot to set alarms to wake up.

Everyone says, “it’s got to be such a relief, though, since she died…” It is, in some ways. But in others, it is the same, just different, level of stress to readjust to “normal,” which is difficult now anyway because WHAT IS NORMAL in a world of COVID? I focus myself on cleaning and doing what needs to be done before anything else (music, photography, etc.) when the things I used to do I was only able to do mindlessly, really – just as a distraction from insanity.

I don’t know if this will make sense to anyone who reads. It has to sound like the ravings of a lunatic mind – but as I’m remembering my intelligent, creative, indulgent, passionate, and subconscious mind I find myself feeling everything from confusion to guilt to elating freedom to even complete blankness and emptiness.

It’s not the grief. Well, it’s partially that but only about 3/4. I don’t know, in this moment, WHAT the word or feeling or experience is. I remember going to through it to some extent after Dorie died and I had been such an integral part of taking care of her, but it wasn’t the same as this, nor was the care.

24/7 worry and anxiety about someone for years, and then 24/7 for months – even to the point of every single daily task they needed to do and then to the point of helping them through every moment of their death…it’s a completely different experience to readjust to existing without that task attached to your back when it was there for so long.

So yeah, you’d think it’d be lighter, more peaceful existence…but it’s actually more like a feeling of chaos. I hope like hell it doesn’t last long. I have too much to do – and, too much I want to do. I assume it will last through and a bit beyond probate because that limits me on the speed at which I can chose to move forward and move on… If it were up to me, I’d snap my fingers and life and the “me” I was “pre-Alzheimer’s parent” would click right back into place.

We don’t get into any state of being in the blink of an eye and we become the next version of ourselves even less quickly, I suppose. That’s been my past experience. So trudge along and get it done, I guess… ((Yawn.))

🤷‍♀️

The End of the Road (Last Blog Before My Mother Died)

TW: the dying experience. Do not read further if you can’t deal with that kind of reality, or if you’ve had a recent loss that this will gnaw at…







Seriously, I’m going to share this reality so don’t keep reading if you’re not comfortable with this type of thing. This is my coping mechanism. To write. To share with those who can handle and understand it. To feel like my support system is with me…







This morning around 3:30am my mom’s oxygen started dropping. First it was 92. Then it was 90. Then it was 88. Then it was 85. She kept yanking the oxygen away. I stuck it in her mouth until the higher dose of morphine kicked in and she relaxed. Then, I put it back in her nose.

I called the after hours line. I was told I was doing everything I needed to be. I mean, it’s kind of common sense at this point, after the others, for me – but that doesn’t mean adrenaline and norepinephrine don’t fly and dopamine and seratonin don’t plummet…and you need that reassurance because you second guess. You feel responsible for more than comfort. You feel responsible for the pain, too. You can’t help it.

I cranked the oxygen up to 3. I started giving half doses of morphine every 30 minutes. Her chest would rise when she gasped, then cave in. Then the fluid rattle started again with her shallow breaths.

She would draw up in a fetal position, moaning and gasping, still with oxygen in her nose but oxygen levels still rising and falling at will because of the mouth breathing and the breath holding and the inability to get enough oxygen with the fluid.

She has not eaten in 12 days. She has not drank in 3 days. She is in the final phase of the dying process. I knew that. I know that. But nothing prepares you for that. I am grateful that she is home, and that I moved here. I am grateful that it is not the nursing home I fought for, or the hospital, where I likely couldn’t be with her…where she would be alone.

I have laid with her – some would say a gift, and I agree…though in the moment it doesn’t feel like one. I suppose it will one day, just like with both my grandmothers, my Daddy, and Dorie, and pets… I held her hand. I cried silent tears, watching her face grimace and her eyes open with the moans only to reveal cloudy, lifeless eyes. I waited patiently for the nurse.

The nurse came at 8:30. Upon assessment, the things are happening. The limbs are cooling. The bp is dropping. The heart rate is rising. The temperature is rising as her core fights to hang on. All the things.

It could be today, it could be three days. It could be a week – probably not longer than that, because of the lack of food and fluid. I have chosen to make her comfort the priority, with oxygen, and liquid morphine and Ativan. Myself and the doctor have chosen to forego the feeding tube, and IV fluids. There is no point in drawing it out, and a DNR is a DNR – all those things are at this point are life support. She doesn’t want that. It’s documented. I will not allow myself to feel guilty for those choices. She made them long ago – not me.

But it’s not easy. It’s not a happy choice. It’s not a good choice, in many’s eyes, I’m sure – but for her it is the right choice. And I will live with having to make it for the rest of my life. But I will also live for the rest of my life, however long or short that may be, knowing I’ve done all I could and what we felt was best for her. She has fought me tooth and nail, even changing the locks to keep me out of the house and away from her business, and now she groans when I’m not there. My, how things change. How they heal. How they induce growth. How they make you a different person.

I have been many different people the past year and a half, through the worst of all of this – some not always graceful, some quite angry, some extremely depressed…and now, regardless of the amount of time left, I feel nothing but…strength. Courage. And love.

I will see you all on the flip side… Love one another. Be kind. And live with an open heart. 🙏❤️

You’re Gonna Miss This.

One day, you will sit alone and look through old photos that seem like they were taken just yesterday but really, those moments are so far away. They’ve become memories, and a life that you once lived… Treasure good and happy, joy and thrill filled moments…indulge in those moments – whether experienced with those you care for or experienced alone – while you’re taking the photos and living the experience. Make them count. When they become just a memory, never look back at them with regret, because in those moments you were alive. You were living – not just existing. And being alive and not just existing is what life is really all about about. It is always “the good old days,” in one way or another… Never forget that.

“You’re gonna miss this

You’re gonna want this back

You’re gonna wish these days hadn’t gone by so fast

These are some good times

So take a good look around

You may not know it now

But you’re gonna miss this

You’re gonna’ miss this

Yeah

You’re gonna’ miss this…”

To those of you who have commented on different posts, dm’d, texted, or even called and I haven’t been able to speak to you with everything going on, I’m sorry and I truly appreciate your kindness and your concern for my mom, for my son, for my family, and for me. It means so much – even if I can’t respond right away I see you and feel you there. Love y’all…so very much. It breaks my heart open to be able to receive, and thus continue to give, love…and have hope. ❤️

#memories #summer #goodtimes #wine #water #warmth #sunset #goodolddays #love #hope #gratitude #keepgoing #changeisinevitable #growthisnotlinear #growthisnecessary

What the “Bad Apple” Analogy REALLY Taught Me

It might be one thirty in the morning but it is still Sunday, so Reverend Sister Christy is going to preach. We having church.

Today’s topic is: Don’t give up a good apple in your life just because you see a blemish and mistake it for a worm.

Misery may love company. But you know what miserable people really want? To be heard even in their silence. To be cared about even when they’re misunderstood. To be thought of even though they may not want to be seen. Even if they can’t or don’t want to express themselves or respond…they need to know they still matter, not tossed to the side because they or their struggles make you uncomfortable.

Why? Because disconnection is not humanly reasonable even if a human being doesn’t have the ability to express themselves – and all people are not going to express themselves in ways you can understand when they DO express themselves. We are meant to be a collective, supporting each other, even if it’s just with a comforting smile and soft eyes, or a simple, “Hey there, I was thinking about you and I’m here if you need me.”

People don’t necessarily always want or know how to express themselves. They may not necessarily want that. But what everyone wants and needs, whether they express it or not, is to have the option.

So get down off your high horse, Herod Agrippas of the world, and sit down and LET PEOPLE BE EXPRESSIVE in whatever ways they can be even if you can’t understand those expressions – and as long as they’re not abusing you in any way, if you don’t have anything nice to say or don’t know what to say? Just say so.

Stop punishing people just because you have your own issues and double standards, Herod Agrippas of the world. Get rid of those double standards, and if you have your own issues? Work on them rather than personifying them.

I won’t even say “as long as they’re not hurting you,” because you know what? SOMETIMES THE TRUTH HURTS. Abuse is different. But just because someone’s behavior or choices bothers you, or you don’t agree with them, doesn’t make them invalid or constitute a behaviors they should be punished for by someone with their own flaws and faults. NONE of us are perfect – and for all who would argue that the biblical God was, he himself was not perfect and he KNEW that after he screwed up “man” (see https://lifehopeandtruth.com/god/who-is-god/genesis-6/).

Here’s the thing: You aren’t living someone else’s experience. THEY ARE. So be kind in the ways you can be, even if it is to explain to them that you can’t be of help to them. Be thoughtful. Add some good to the world by shutting up and just offering to listen, even if they don’t want to talk. TRUST ME – that matters. It counts. It’s worth the effort in the long term, even if it angers them or seemingly stresses them, if you truly care for them.

No. Don’t give up a good apple in your life just because you see a blemish and mistake it for a worm.

Morning Coffee Thoughts | June 30, 2020

We have to stop shrinking ourselves so that others feel bigger and better than they really are. We have to stop doing things when we don’t want to do them, giving things we don’t want to give, accepting things we don’t want to take, and apologizing for things that are the essence of who we are when who we are has never done anything but love the person we are apologizing to.

Apologies should come from people who have actually done something wrong…and even from those people, apologies and respect shouldn’t have to be begged for. The best apology anyone can offer is not in words but in changing their behavior without us having to remind them what we need every time we turn around – the best apology is them just respecting what we ask without us having to ask it more than one time.

Is there anything you feel I need to apologize to you for? Is there anything I need to or can do for you that I don’t already do? Is there anything you want from me that I don’t realize you want? What can I do to contribute to your happiness, and to life you up, today (or any day)?

These are the questions people who claim to love us should be asking us. These are the questions I’m asking you to ask yourself every morning. These are the questions I am asking you this morning. Answer them with the nitty gritty, real truth. Your truth. Don’t be a version of yourself to placate me or anyone else.

BE AUTHENTICALLY, UNFORGIVINGLY YOU and accept nothing but what you deserve.

I’m Done. (Re-Blog)

I’m done, too…. Have been for quite some time now. I think it hit me when I worked so hard to repair a friendship and support the person’s new life not realizing or fully accepting that we weren’t really friends at all until I was accused of “stalking” because I added the person’s new boyfriend as a friend on a Facebook “without asking permission.”

Who the hell asks permission to be friends with a friend’s boyfriend if they are truly friends, especially when they are 30+ years older than you and it is extremely clear that you have zero interest in drama and only have an interest in getting to know and support people?

That experience taught me that it is very rarely about you but almost always about some insecurity or issue that someone else has when they do something completely ridiculous like that. I’d done nothing but prove myself forgiving, trustworthy and kind up to that point but that day, in the blink of an eye, I was done.

I was angry, and I was hurt. I’d done nothing but listen to this friend go on about not wanting to disappoint anyone by going on with life and had been encouraging and, I hope, uplifting about it all. I gave a hundred percent to making an effort to support this person’s new life and to encourage them to live it however they saw fit to live it, not worrying about the judgments of others.

I felt insulted and used as a human being. And, ultimately? It had very little if anything to do with me. It had to do with that person’s own lack of trust, whether in me or the boyfriend or whomever. It had to do with their lack of actual concern about me, and that day that lack of concern slapped me in the face out of nowhere.

That day, I didn’t give up on the person, I finally saw my own self worth and let that person go, like I should have done all the other times that person had walked out of my life, instead of trying so hard to make what was not meant to be in my life work in some way.

This post really spoke to me. Sometimes you’re gonna love or care for people at different levels and in different ways that are never going to truly care about you. Sometimes, they’re gonna say they do but their actions are actions that speak more loudly to their lack of care and concern than the other way around.

The following re-blogged post was me that day, and every day since in any situation where I feel used or mistreated, and I didn’t even realize it until this moment. I have learned to truly be done without questioning when my heart says it’s time.

It feels good to be done.

Life Bloggs Club

I’m done holding the door open for people and wondering what I’ve done wrong instead of realizing it’s their loss.

I’m done trying to give people a reason to stay when in reality, I shouldn’t want someone who doesn’t want to be here.

I’m done investing time and energy into people who just don’t care.

I’m done picking myself apart for people who only ever took everything I had to give and left once they realized I didn’t have more in me.

I’m done saying sorry to people who should be the one apologizing.

I’m done letting guilt eat away at me when I shouldn’t

I’m done fixating upon my flaws and trying to win people over when there are so many people who wouldn’t like me if I changed.

I’m done pretending to be someone I’m not simply to fit the mold of their expectations. 

I’m done trying so…

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Lunar Reflections

Lunar Reflections | catacosmosis

I often stare at the moon, reflecting on the things that are in progress in my life. I’ve always done this, even as a child. It’s as though she understands.

“The moon is a loyal companion.

It never leaves. It’s always there, watching, steadfast, knowing us in our light and dark moments, changing forever just as we do. Every day it’s a different version of itself. Sometimes weak and wan, sometimes strong and full of light. The moon understands what it means to be human.

Uncertain. Alone. Cratered by imperfections.”

—Tahereh Mafi