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.))

🤷‍♀️

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.

I can’t – and that’s OK.

I can’t, and that’s ok to know and to accept and to feel and to express. That’s what this post is about. I know I haven’t really updated here and none of you will know what is going on in full but basically my mom has been living with me and… Well…

There comes a point where you have to accept what you can not do and stop letting people keep trying to convince you that you can do in their “motivational” ways. Sure, they’re trying to help.

But when I say I CAN NOT DO THIS BY MYSELF I need people to understand something: i am doing this BY MYSELF and it’s not working – and it’s not about not wanting to. It’s not about not believing in myself. It’s not about the inconvenience. It’s not even about my own mental health (though it should be). It’s about LITERALLY not being able to care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this. And…she’s not really even my mother. Never has been, by blood or otherwise.

It’s about debilitating migraines. It’s about health issues I had long before this ever started.

It’s about I PHYSICALLY am not strong enough to help someone who refuses to help me help them – lifting dead weight every five minutes to go to the bathroom? Nope. Can’t handle it. Especially with a migraine. Getting her in the tub? Impossible. So we improvise with bowls of water and a tub chair OUTSIDE the tub. Getting her to eat? Also impossible. Which doesn’t help with her strength issues. Getting her to get out of the bed and sit up without arguing and telling me how disappointed and ashamed of me my dad would be that I am trying to make her do something she doesn’t want to do – on his birthday yesterday, when she knew how upset I was – because she KNOWS what she’s doing and she just wants to hurt me.

This is not the dementia. This is just her being hateful and stubborn, naturally. Does she even have dementia? No. Not according to the doctors. She checks out fine. So this is just an angry, bitter, mean, frail and weak old woman who needs help with physical things 24/7 and is being verbally and emotionally abusive to the only person who can keep her out of the one place she doesn’t want to go – the nursing home.

Can I even get her in a nursing home? I don’t know. But I’ll tell you this much – I’m going forward with trying because the few people who have even dealt with her for a half hour at her home or dealt with her at church or even the beauty shop over the past few years have straight up told me that she is faking a lot of this and how she acts when I’m not around.

When my helping you hurts me to a point where I am literally sick all the time? I can’t help you anymore. And I will no longer try. This is my honest, heartbreaking statement: if she wants to do it her way, I will take her to the hospital and leave her there and refuse to care for her. They can’t put her on the street. I don’t know what they’ll do with her but it’s not my concern – I have NO binding, legal obligation to be responsible for her. Why? Because she won’t LET me – and maybe that’s been a blessing in disguise.

She’s already getting bedsores because she won’t move and wants to lay in piss diapers and fights me to change her. It absolutely ridiculous.

I don’t care about how it looks if I do take care of her or if I don’t. It’s not about that. I don’t want accolades for doing it, and I don’t give a damn if people think I’m horrible for not being able to do it. But I can’t do it. I can’t care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this.

It’s always going to be a never ending battle I’m never ever going to win. I have finally accepted that.

Now. To take more meds and pray my head quits and I can fucking breathe for five minutes without feeling nauseous and debilitated.

Bad Days, Good Days

I have spent a lot of time thinking about this in the last couple of days:  At this time in my life it’s not even about ups or downs or moods…it’s about bad days and good days. People say that you can choose to have a good day just by having a positive thought when you wake up, or by praying or meditating when you wake up – all sorts of different things like that, usually involving gratitude for something, even just life itself. I find that extremely difficult some days, and completely untrue on those days, as witnessed by my past couple of posts.

I don’t think that the power of positive thinking is always enough. There is nothing I can EVER do to change things with my mother. I can not cure dementia. I can not change her. I can not change the situation as it is at this time. Same thing with grief – I can not change the fact that my father and my best friend are dead. They are not coming back. In those instances, people will say it’s down to acceptance and that is true. I can get behind that, to some extent, although as most of you know I don’t believe in such a thing as an end to grief…

I was listening to music earlier while I was folding laundry and this song came on called, “Breathe Me,” by Sia. It hit me in my gut like a bad piece of chicken. We can take responsibility all we want to, we can take action all we want to, but sometimes it just hurts. Sometimes we are just lost. Sometimes we are just hurt. Sometimes we are just afraid. Sometimes we are all of those things and more, all at once, and we are completely overwhelmed. That’s where I’ve been.

Yesterday a friend of mine told me, “Now I’m gonna say this and I just want you to listen to me. I don’t want you to use (anything) as a crutch. You’re STRONG. You walk around with a shaved head because you want to! You don’t care what people think…” She went on… So last night I laid in bed, in my pitch black and freezing cold bedroom trying to stave off an impending migraine (unsuccessful, by the way), and I let all she’d said float around in my head. And ultimately, two things stood out to me.

I do have a crutch. It is alcohol. And it is a waste of time – it doesn’t accomplish anything positive, except momentary lapses in the ability to feel things. And, strength is relative. People see different things as examples of strength. The fact this person, who has been through more than I ever imagined when I first met her, completely rebuilt her life and walks around with such an air of confidence even my shaved head is in awe – for this person to say to me, “you are stronger than this. You ARE STRONG,” humbled me in a way that I couldn’t understand. Of course, that led to more thoughts and more considerations and a whole lot of writing in my journal…but I fell asleep knowing that I did not want to drink today.

And I didn’t.

And I don’t know why. I don’t know what changed.

I do know that by lunch time tomorrow I’ll be craving alcohol like the drought ridden fields crave rain…and I don’t know what I’ll do about that. Probably text or call her, or my cousin, or my therapist…maybe go to the feed store and hang out. I don’t know. But I do know this much – if you really want to make a change, you will do it.

I haven’t smoked in over 24 hours, haven’t had a drink in over 24 hours, and the only reason is because I just wanted to see if I could. I didn’t tell anyone until later in the day today, when I was at the feed store. I didn’t keep it to myself because I was afraid I would fail. I kept it to myself because I only wanted it to be about me and what I wanted.

I don’t know what tomorrow will bring. But I do know that I don’t feel the same way I felt a few days ago when I was battling the suicidal ideation and the complete lack of regard for my life, my health, or my Be-ing. I don’t know what changed… I think mostly, it was being seen, and being cared for, and being spoken to in a way that wasn’t at all what I expected.

I always said I would never allow another “Dorie” into my life – or at least that there would never be another her. I think I may have changed my mind…or my heart… You never know who is going to walk into your life, or when.

Therapy.

Therapy used to be the bane of my existence. Now that I have the best therapist on the planet (for me) via BetterHelp, it’s not so bad. The whole thing revolves around my time schedule – which can be pretty chaotic – and finally finding (or being gifted by the universe?) a therapist who GETS ME is priceless.

That said, it doesn’t change my thoughts or feelings. It helps me to express them in a safer environment than any other, but the reality is that my kind of depression doesn’t ever really go away. It’s up and down, it doesn’t flip but it rises and falls. And with my mom? It’s basically a pit of hell.

I think the thing that brings me down the most is watching this all play out and not being able to do a damned thing about it. Dementia is like that. No matter what you do, it’s gonna progress. Maybe slowly, maybe quickly. Maybe meds help. They don’t if you’re fighting with the person to even take them.

Mostly, the whole situation makes me both miss AND respect my dad so much more. Sometimes I am so angry that he is gone. Most of the time time I’m just sad. Sad at a level that isn’t just melancholy or blue, but at a level that is a thunderstorm – dark clouds and pouring rain, raging winds and thunder in my head. Sad at a level that I can barely breathe through these days.

But here I am. That counts for something, I suppose. Even still, I feel so useless to everyone around me. I feel useless to my mom because she won’t LET me be useful to her. I feel useless to everyone else because, well, depression. I just stay in my room, and read. I cry but I don’t know why as it doesn’t really let anything out. I wish that someday I would be able to find the words to describe this experience just in case I make it past it and have an opportunity to help someone else.

I hope you all have a pleasant weekend. I appreciate your correspondences and your kindness more than you know. You help me more than you know.

All the love,

C.

Feeling Old

This past week or so has been so crazy. I know – I’ve already written about that more than once. But tonight I want to write about how old I feel, and it’s BECAUSE of not just this past week (while the majority of it is) but of being my mother’s caregiver in general for the past few years.

In itself, caregiving gets old. But the way it makes you FEEL… Argghh! There are days when it doesn’t feel “like a gift to be able to care for one who once cared for you.” There are days that I don’t feel “grateful for the chance to give back.” Pfft. Let’s be real – it’s emotionally nasty. It’s a nasty, dirty, wreck of an emotional job and it SUCKS a LOT, a lot of the time.

That said, I still push on. As of now, as you all know, I don’t have any other choice.

In updates to my lasts posts about my mom, I’ve gone in to check on her and twice found her in the floor since those posts. There have been a couple of other issues that have come up (financial issues), and all she wants to talk about is going to buy a new computer. She doesn’t even have the Internet right now. She has an iPad. I explained this. She doesn’t NEED a computer, she needs to worry about us getting other issues sorted – namely her CARE. It’s just like she doesn’t NEED, nor can she have, her car.

She doesn’t – she can’t, or she refuses to even meet me halfway and try to – live in the reality that, as sad and frustrating and angering and annoying and depressing and ridiculous as it all is, especially for her, her life is not, can not, and will never be again what it used to be. I know that is awful for her…but it’s emotionally exhausting for me, too…

And you can’t ever make that make sense to them. You just can’t. It’s a losing battle to try, so you lie to them. You tell them, “maybe when you heal from this fall.” Then you say, “maybe we should give it just a couple more months.” Then you say, “maybe once we get the car fixed,” even though the car is not even broken. You make shit up. You LIE to your parent, even though as a child you were beaten for such nonsense. Like, BEATEN. With a hickory switch.

The role reversals are hard. They make no sense to my brain some days. Some days, despite the fact that my mother was never in my life like this for me, I want her to be my mother and hug me and tell me it will be OK and say comforting things like, “we’ll get through this,” or, “your daddy would be so proud of how much you’ve done here, and that you’ve worked so hard to get this back to a working farm.” It’ll never happen. It wouldn’t happen even if my mother didn’t have dementia/mental health issues. But as a child, I DO wish it would.

My life exhausts me. I get up early in the mornings, I take care of mama and the horses and chickens and everything. I come home and take care of my kiddo, we do things, whether it’s school or playing outside or whatever. I do housework and yard work at the neighborhood house. Then, after whatever other running around I’ve done all day (bank, post office, etc.), it’s back to the rinky dinky little farm I’m trying to build and mama’s, to either bring her home or to make sure she still IS at home.

By the time I sit down at dark, I feel like a little old lady who can hardly crochet anymore because of her aching, arthritic hands – and I only have slight arthritis/carpal tunnel – when I try to write or type these things out of myself. I feel like a firefighter who has been battling a blaze all day long in the hot summer sun. I feel like a marathon runner who has been training all day. I feel like a doctor who has been running all day long to go from this patient to that, this hospital to that office to this building to that, trying to make sure everyone is being cared for and check to see how they are and what they need and what changes need to be made, etc.

Yet, I’m nothing so achieved as a firefighter or marathon runner or doctor. I’m just little old me, wearing myself down to the core of my sanity and watching it start to spindle apart backward, one twist at a time coming off the spool and piling up in a big ball at my feet. Then I get tangled up in that ball, and start tripping over my own delusions and disillusionment and exhaustion and the anxiety and panic start to build and then the depression grabs on, you know, just for kicks, and I end up sitting in the pile of sanity that I used to have, having a complete come apart.

Does any of this make any sense? I don’t know if it does or not, if you’ve never been in a situation like this or at least somewhat similar to this. But I have a hunch that most of us have felt this way at least once – maybe more than once – just because…well, LIFE.

Life is a gift. Yes, it is. And I am so grateful to be alive. I just wish I felt it. I do, sometimes…but I fear I’m wearing that escape thin, as well. Perhaps I should just dwell on writing about the life I wish to live rather than chasing after one I can’t have right now…and another one I know I never will have (because some things are just not meant to be and not gonna happen…you know?). I’ll keep making music, and sometimes sharing it. I’ll keep playing with photos. I’ll keep hugging my son and my doggos and my gentle giants. Playing with my chickens, and with fire.

I’ll stay on the outskirts of my own chaos for as long as I can before I let it suck me in. I will make no promises on how long that will be.