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.))

🤷‍♀️

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…

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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Never

Sometimes,

a thing needs to get lost,

never to be found again,

before I realize just how much

it really meant to me while I had it.

Her laugh,

her smile,

her scent,

her softness,

the sparkle in her eyes

when I’d tell her the secrets of my heart…

and the fire in them

when I’d tell her the pain in it.

I never expected to have a “her”

in my life.

I never expected “her”

to last twenty years…

Then, cancer.

Three years later,

three years since the end,

I’m more convinced than ever I

never will again.

Sometimes a thing,

like this one,

doesn’t get lost.

It is taken.

Stolen away,

for what seems like no reason at all.

That pain never heals.

Never.

~C.

An Alabama Snow and a Memory

There is nothing like the joy of a child, or your love for that child and that joy.

It’s snowing here tonight – very lightly, compared to our snow in December, but snow nonetheless. I have a memory that always returns to me when it snows here in Alabama. It is a memory of a father watching his only child play outside in an Alabama blizzard at something like 9PM, darkness never bothering the child and snow never failing to fascinate and excite.

I remember this man watching this child and seeing a sparkle in his eyes, despite his misery at being outdoors in the cold, dark night, wind howling and snow blowing from what seemed like all directions.

I can see him suffering at the hands of neuropathy and overworked muscles and joints, every step a sharp pain and every breath a hope for the snow to stop and the pipes not to freeze. But I can also see him glorifying the excitement and the newness of the snow in the child’s eyes and spirit, and struggling to roll the three parts of the snowman just in case it melted the next day.

Turns out, that snow lasted for almost a week, there was no power until days after the snow had melted, and the man saved the child from frostbite by giving the child his own full faced toboggan halfway through the snowman building process.

This man was willing to suffer for his child. He was willing to forgo the knowledge that his body would hate him the next day, that he wouldn’t be able to go to work (even though there was a blizzard his factory didn’t care – he was a supervisor and was expected to be there, no matter what).

He didn’t care that he was hurting or that he would pay a price for the temps in the teens and the random but grand night adventure. He played. He laughed. He threw the child in the air and caught the child. He didn’t let her fall. He never let her fall.

This man was my father, and this child was me. And I will NEVER forget that night or that blizzard, not as long as I live. I will never forget the milk and the goat cheese and the freshly churned butter and the wax paper wrapped venison and squirrel that he’d taken for us and cleaned and processed himself, literally buried in a drift of snow, or the cooler on the deck full of all the condiments and other refrigerated foods.

I will never forget his smile. His laughter. His attempts to run and to make six foot four inch snow angel and perfect lines of size sixteen footprints right alongside my own. I will never forget the light in his eyes, even in the dark, even in pain. I will never forget how warm I was when he would hug me up in his own coat or the comfort in the voice I have almost forgotten saying, “how do you like the snow? Are you having a wonderful time? Do you see and feel the magic?”

I am thirty nine now, and have an eight year old child of my own, and suddenly tonight I realize the sacrifice that was a part of what was one of the best memories I carry in my soul. I know now what he gave to me – not just suffering the cold that southerners “can’t bear,” or staying up late, or giving up his recliner and his comfort. He gave me his time. He gave me his patience. He gave me his love. He gave me his heart.

When you have a child, and you love that child, that’s what you do. It’s not even a choice. It’s just what happens. You don’t think about your own comfort, even if you repetitively say, “I don’t know how long I can stand this cold!” You just…do. Because the child brings out the magic and the joy that’s been buried in your soul by an exceptionally long overworked-with-nothing-to-show-for-it run.

You realize you have everything right there in your arms, and no amount of pain (physical or emotional) or cold or worry about the future is going to stand in your way of that moment. That now. That memory.

That’s what I experienced tonight. Tonight I became my father. And now I sit in bed and weep tears of both longing and joy. Because I was raised, protected, loved and spoiled by a loving man. A faithful man. A steadfast and gracious man. A good man, despite his flaws.

Watching my boy, and playing with him tonight in the cold and the wind and the little bit of snow that presented itself, I realized that I carry that within me and I am capable of giving it to my baby. Although eight years old, and someday 39, like me, my baby he will always be.

I love you, Daddy. And I am so grateful for the 36 years I had with you. Thank you for the life you gave me, and the heart you taught me to have. And thank you for the snowman.

She’s Elderly, and Senile, and Hurtful, But…

Session tonight was…emotional. It was one of those tearful, snotty, sobbing sessions – one of those ones that I go into wishing I could slide down a razor blade into a bucket of alcohol instead because that would hurt less, but at the end of it am left calmer and numb and call my mother back on the phone and say, “hey, I love you. Despite all you do to make me hate you, I love you, and that’s why I have done the things I have done.”

I’m trying very hard to accept and continue to be myself, and appropriately deal with my mother, even while many people in my life are dumping their opinions and unwanted advice on me like seven dust on a yard full of fleas.

I believe that…

No one has the right to tell you how long your grieving should last or how fast or when you need to move on, not even your own mind. Follow your heart.

No one has the right to judge or hurt or ignore you – especially when they call you “friend.” Don’t believe them when they call themselves your friend. Friends don’t do those things – not on purpose.

No one has the right to tell you how to live your life or how to be who you are. Don’t listen to them. Don’t try to manage or live your life based on other people’s double standards.

No one has the right to make you cry. Don’t believe anyone who tells you that your tears are your own fault.

Just because you’re not dealing with things the way someone else is dealing with things is irrelevant – they’re not living YOUR life or YOUR situation or walking in YOUR shoes.

That said, sometimes we care about other people so much – the people who do these things to us – that we continue to try. We continue to take responsibility for them when we know or believe we have a responsibility to keep them safe – especially when they’re mentally ill or senile or sick…

Because while I DO believe in taking responsibility for our lives and in taking care of ourselves, I also believe in taking care of others – even those who have hurt us – when they need to be taken care of – especially when they are mentally ill.

If my husband, for example, had given up on me because of my depression and actions and words (or lack thereof) – and Lord knows how many bad episodes there have been throughout our relationship – if he’d walked away to take care of himself or because he decided not to “allow” it anymore, I’d be dead by now. I’d be dead two or three times over. And that’s the truth. But this post isn’t about my depression. It’s about my mother.

Whoever reads this gets to have their own opinion. That’s fine. But don’t comment to me about how no one has the power to make a person do or feel anything unless the person hurting allows it because that’s bullshit. That’s what my therapist and I have been talking about in session tonight – how that’s all I’ve been hearing for three days now from different people around me regarding my mother, and I’m sick of it.

People’s words – or even lack of them – can HURT. People DO cause tears and pain and it has nothing to do with what someone is allowing to “control” their emotions. That’s a copout and it’s blaming the person feeling the pain for feeling pain that they didn’t bring onto themselves.

Sometimes a person can’t “walk away.” Sometimes there is no choice but to allow it to continue to some extent, or even fully. Sometimes there is no other option but to bide your time and wait for your moment to “escape.”

So for those people who keep saying things to me like, “why do you “allow” it to continue this way,” or telling me how I am only responsible for myself, I have a question (or two or ten):

How many times did YOU choose to allow someone to continue hurting you (in ANY way) because you loved them, or because you FELT you had a responsibility to take care of them (whether you actually did or didn’t)?

How long did it take YOU to start blaming yourself instead of someone else for how they “made” you feel? I’m sure you probably ALWAYS blamed yourself for the actions or behaviors of others, right? I’m sure you NEVER, ever were hurt by their words or actions and only blamed yourself for “allowing” it. Pfft.

And then, how long did it take you to STOP blaming someone else? Or do you still say things like, “he is/was such an asshole,” or, “she is/was such a control freak,” or, “they were/are so ridiculous?”

You know what? He/she may have been or may still be those things. That’s the role some people play in the world. And they’re hurtful and they ARE to blame for the pain they cause. And you may not always be to blame for “allowing it to continue.” Every situation is different. Don’t judge mine.

From my therapist:

“Maybe a person’s situation doesn’t allow them to fully escape the person hurting them. Maybe a person judging, or telling you how to live your life and deal with your situations, even when you agree with a lot of their advice and wish that it COULD work for you, just doesn’t get it. Maybe they don’t or can’t grasp the full scope of your situation.

Or maybe, just maybe, other people just don’t have the heart or the character you have – not everyone is strong enough to endure mental illness or abuse and still love the person or care for the person who has or does hurt them (emotionally in this case), and not want them to hurt themselves, and want to protect them from dying or care for them while they are dying despite the pain they themselves might be feeling, or want to try to help them to help themselves.”

And so this all sums up where I currently am on the situation with my mother. Her idle threats don’t scare me. State laws don’t scare me (at this point). But I DO have a responsibility to take care of a woman who has no one but me and is literally going senile.

Not eating or taking care of herself.

Becoming a danger to herself and others.

Even if that care exists only in bringing in outside help and even if it means having to sometimes be exposed to her narcissistic and emotional abuse, I DO have and carry that responsibility.

She’s not my mother, but she used to be.
Sometimes she was.

Until session tonight I’d forgotten that sometimes she was normal.

Sometimes she helped me with school projects all night until they were finished (even if only because she wanted me to get an A for her).

Sometimes she cooked meals instead of delegating that task to my father despite his working, too.

Part of her controlling behavior was keeping the house spotless and sanitary and that’s was, in some ways, good for me and my health and well being.

Sometimes she made me clothes, with her own hands, because they couldn’t afford to shop for them.

Sometimes she hugged me, and meant it, even if I never remember her ever telling me she was proud of me unless it was in front of someone else.

There were others, but I’m finally sleepy now and will save them for later…

Tonight, my therapist cracked open a whole new set of memories from my childhood with my mother that I had blocked in the process of trying to block the bad ones. And tonight she made it a point, in “forcing” me to share some of those better memories, to remind me that despite my mothers illnesses, she is human – just like despite my illnesses I am human. That’s the thing I have kept trying to get people to understand about my heart and why I struggle so with the whole situation since my Dad died.

There’s a song by Rascal Flatts called, “What Hurts the Most,” that comes to mind and while it is actually meant to be about a romantic relationship, it reminds me very much of my relationship with my mother throughout my life. There are these moments – or have been – of being so close…and what hurts the most is not knowing how it could have been to have had her as my mother consistently when every now and then there would be a little taste of her being kind, being motherly, not hurting me…and those are the parts my heart still carries that keep me in this place of caring…

Don’t. Judge. A. Heart. You. Don’t. Know.

Don’t. Judge. A. Life. You. Don’t. Know.

Don’t. Judge. A. Life. You’re. Not. Living.