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. 🙏❤️

Dementia, a Mother, and an Adopted Child

**Edit: my mother passed away 26 hours after I posted this.**

About five months ago, my mother was mentally bad and had wandered and broken her arm. Three and a half months ago I brought her home from the hospital. For years before this, from about six months after my dad died, I had struggled and fought for her and tried to care for her but she didn’t want to let me. I heard, “I am FINE,” at least 72,000,000 times. We had all made jokes about her condition – jokes about “NaNa” – jokes about how bad she was getting, “but there was nothing we could do…” Yet, I still fought…and I know those battles, and they’re why I’m here tonight.

I wish we hadn’t done that…made jokes, because it’s not funny. But I’m glad I never stopped fighting, even if we never had the mother/daughter relationship I always wished we’d had and even if I didn’t get her the help she needed WHEN she needed it because of a broken system that doesn’t correctly diagnose dementia/Alzheimer’s until it’s too late to really slow it down. It shouldn’t be this way – not with the research and the knowledge we have, medicine we have, and resources we have in this country.

I am at peace with the fact that I did my best – that I did everything I could. I don’t need to be externally validated for that…but it makes me feel and have almost a need to validate others who are or have been or will be in my shoes. All these years…they’ve culminated so quickly – in just a matter of weeks.

Three months ago, my mom looked like this (first photo) when I picked her up from the hospital. Tonight, she looks like this (second photo), grimacing and clenching in pain, almost choking on even oral liquid Ativan and Morphine, and her own phlegm and fluid, coughing like a weak squirrel, moaning and crying out in pain to the God that she believes in and still praying incessantly (again, quietly like a weak squirrel, but in pain all the same, barely able to verbalize it).

Dementia and Alzheimer’s are considered mental health issues and illnesses. Don’t tell me you can’t SEE IT because “it’s a mental disorder.” You CAN see it, right there on the MRI. Don’t tell me it’s not real or difficult or physically painful because it’s JUST a “mental disorder.” That’s what I was told for so many years – she’s just getting older. She’s just getting forgetful. She’s just having “mental problems” because of age. No – not just mental problems. A DISEASE – and a terminal one at that.

And you know what else? Especially if you’re a doctor? Don’t pretend to care when you don’t. When you belittle. When you get annoyed with children who are fighting for a better life and end for the parents. Don’t pretend to advocate because for the moment you feel sorry for someone. Don’t pretend like you’re Gucci just because you give to this or that charity or “buy your way” out of having to actually GIVE CARE.

You know what means even more than your charity checks and your “honest opinions” to families struggling with ANY illness or disease or end of life process when you follow up your explanations with the words, “we care?” When you SHOW THE FUCK UP for them.

I am showing up, mama, and even when you don’t want me here, here is where I will be. Too little too late to heal all the old wounds, but not too late to SEE that bygones can be bygones, and despite all of our bad times, all of the good you’ve done for me.

I’m so sorry for the hell, all the chaos I brought to you. I’m sorry for all the hurtful words and for all the times I fought you. I’m sorry I’m not the daughter you’d always hoped I’d be, playing the philharmonic or writing novels or preaching the gospel…but so many of the good things I am are things that you taught me.

“I didn’t carry you in my belly for nine months, but I carried you in my heart for a lifetime,” is what you’d often say to me…and that “to do your best and leave the rest,” was sometimes the only way to be. These words I’ve never forgotten and these words I’ll never forget.

I will soon, again, be an orphan, a fate you once saved me from…and with these fleeting last moments I am sorry. I know I was wrong. I’ll always be a daddy’s girl, and this always broke your heart…but the reality I thought you lived in was creating jealousy into art. But I always had a mom…

I understand your love tonight and what made you who you are…and that even though we aren’t the same we aren’t that far apart. I want to say, “it’s ok, let go,” though it truly breaks my heart…because I understand after all these years who you really are.

Rest now, precious woman, I know you did your best…and your best was really always enough, though I often put you to the test. I thought you didn’t love me, but you just loved me in your way…and, “rest now, precious woman,” is all I can seem to say…

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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Upside Down

Everything feels so upside down. Today’s doctor’s visit with my mother didn’t go well. I’ve just about gone crazy, and I’m pretty sure that trend is going to continue until I do.

People will tell you not to worry and that things happen as they are meant to but when nearly your whole life is at risk, plus the literal life of someone else if you don’t risk your own situation (in my case, my little farm), it’s really hard to keep your sanity.

It’s really hard to keep your faith in a Creator that doesn’t seem to be paying attention and in a system that has proven over and over again it doesn’t give a single fuck.

It is becoming very clear to me just how emotionally draining caring for someone can be when you’re doing it on your own – and by that I mean not a finger of help from anyone else being lifted, including so called medical professionals.

Caregiver depression is a very real thing, made much more difficult by being invisible not only to those who know you but also by the one you are caring for. I truly don’t know how long I can continue on like this mentally…

Wary Faith.

Whatever it is you’re going through right now I want you to know you aren’t alone. And it might feel like you are. It might feel like a million things are piling up on you and you don’t know if it’ll get heavier or how much more you can bear.

And you might not know who to turn to or even where to start.

Because suddenly all of this just hit you at once.

It’s like you’re floating on the surface but below no one can see you are flustered and kicking for your life just to stay afloat.

You look fine.

You smile when you have to.

When someone asks, “how you are?” you say, “good.”

But part of you wishes you weren’t so good at faking it. Part of you wishes someone would call your bluff and say, “I know you’re lying, what’s wrong?”

We’ve been told the best thing to do is lie. So we lie to ourselves saying everything is fine. We lie to everyone else saying we can handle it. Whatever that it is.

Then it just becomes too much.

I’m here to tell you it’s okay if things aren’t going well right now. It’s okay if you’re hurting. It’s okay if you want to fall apart and scream at the top of your lungs because things outside your control are happening that you don’t understand. You’re trying to find clarity in moments of confusion. You are trying to put a band-aid on the pain you’re repressing hoping it heals, but you know you’re just covering it up. Then something else comes out of left field only to hurt you more.

You go to bed at night and you’re just laying there not sleeping, and you don’t want to play the pity card of “why me?” or “why did this happen?” How much worse can things get, only to watch it play out even more?

You’re trying to piece yourself back together but you’re cutting your fingers in the process, and honestly, you don’t even remember what it feels like to be whole or completely happy.

You hate that being happy is so hard to achieve right now.

But more than that you hate that no one sees it.

You’re holding back tears and putting on a brave face because it isn’t socially acceptable to start crying in the middle of a workday. Not when people need you. Not when people look up to you. Not when people are watching your every move like your life is a show for their entertainment.

Just when something starts to shift and there’s even a little bit of light, someone has to come and ruin your day. It’s a snide comment. It’s criticism. It’s one little thing or conversation that almost puts you over the edge.

Like everyone in the universe is out to get you. And it isn’t like you to be this negative or pessimistic. But everyone has those days that turn to weeks and sometimes months where nothing seems to work in their favor.

Despite being given every reason to be mean to others and treat them the way they have treated you, you don’t. You replace their unkindness with silence. You replace disrespect with being the bigger person. You replace someone going after you with keeping your head down and mouth shut.

And they judge you for the things you do and they judge you for the things you don’t.

It’s like they have a target on your back, watching your every move waiting for you to mess up. So every step you take is a little more cautious. How quick everyone is to judge you for the little things you do wrong and they forget what you did right.

I know what it’s like to feel that way.

I know what it’s like to not understand any of it.

And you just keep trying. Trying to make them happy as well as yourself only to learn whichever way you change, someone isn’t going to like it.

You want to trust people but every time you have, every time you’ve let your guard down, they’ve gotten close enough to hurt you. So you learn to expect the worst of people, while still trying your best and giving your best to those who don’t deserve it.

Caring deeply about others is both your greatest strength and weakness.

It’s that strength that everyone seems to rely on, even though you don’t know where it’s even coming from.

It’s the energy to never let people down and constantly say “yes” even though you’re tired.

It’s the light you shine in other’s lives and the compassion to look at someone and you can tell when they’re having a tough day because you know what faking it looks like. You ask them how they are doing, even though no one has asked you lately.

It’s keeping it together when someone else is falling apart even when you want to, you still manage to be the arms holding them.

It’s admirable to be like that.

And even though people don’t give you the credit you deserve or even utter the words “thank you,” you keep being exactly how you are and you don’t change.

As hard as it is to be someone like you, you realize how rare it is too.

So when the world gives you every reason to change – every reason to treat others the way they treat you, every reason to hurt others because maybe someone broke your heart – you don’t. I want to thank you for being that type of person.

It’s people like you we need most in the world. So whatever pain or confusion or difficult life situations you’re going through, I want you to know you’ve made it through everything leading up to this and there’s strength within you, you don’t even realize.

Don’t be afraid to fall apart if you have to.

Don’t be afraid to cry if you need that.

Don’t be afraid of any of this.

Because it will get better. Sometimes though, things get worse before they get better. But on the other end of that is something really great waiting for you.

Keep fighting for everything you know you deserve because you will get it.

via Wary Faith.