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…

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.

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.

Staying Busy, Bad Weather, Unfertilized Eggs and Horses with Attitudes

That’s probably the longest blog title I’ve ever used, but it’s accurate. I have been very busy, everything is flooded, my first clutch of eggs left me with about 3/4 of them completely unfertilized and my horses are assholes. I could just stop there, but let me explain further:

A few weeks ago I brought my horses home to my mom’s. I stay there all the time anyway, pretty much, taking care of her. So, I thought, “the only way I can make this work is to move my little farm back to where it started for me as a child.” So far, so good. We got fences built and other fences fixed. We started cleaning off the ruins of the old barn to start over with it. I cut trails and cleaned out areas in the woods for the horses to get out of the wind and weather until that project is completed. And it was all going so well! Cowboy and I had at least one great ride, Anna had her first bareback experience with me (or acted like it was the first time she’d ever been ridden bareback, lol), everybody was happy.

That was until monsoonpocalypse began a several days ago. It’s so awful – and it looks like we have another twelve days to go. OH. MY. GOODNESS. I know that all over the country people are having weather issues – severe ones, in different ways and at different levels. I’m going to say this even though I can’t believe I am – I’d rather be cold than be dealing with horses in a flooded pasture with no stables built yet… (I know – my mouth is gaping, too.)

Sometimes when dreams come true, you have days where they are more of a problem than a joy. Today has been one of those days. There have been some funny moments but mostly? I’ve cursed a lot, yelled at the sky and the atmosphere for being a dick, yelled into the void of the forest at big corporations for causing these ridiculous new weather patterns (believe it or don’t, I don’t care – but I do believe it). In short, “it’s beginning to look a lot like f*** this.”

Here are some photos/videos of how it’s been today. I’ll begin with my early morning feeding, and end with my fresh hay getting pissed on.

At the end of the day, despite my mom’s DISASTER of a doctor’s appointment, it’s not all bad. There are silver linings to all these horrible things happening. For one, I’m staying extremely busy which keeps me focused away from demons that are best left to burn in hell alone. Secondly, I’m outside constantly so plenty of fresh air. And, thirdly, I’m learning a hell of a lot about what I can do and remember from 30 years ago that I thought initially would be the downfall of my success on this adventure.

We all have bad days. But, when one of your horses pisses on the fresh hay you just put out, lays her ears back, gives you the side eye as if to say, “I care nothing about your hard work or efforts, that you’re here on time every day to feed us, that you’re doing your best to protect us from the flooding and keep us comfortable despite these ridiculous nightly thunderstorms, you suck for spraying my ears and I will not forget this,” you can’t help but laugh a little, pat her on the shoulder and feel like you’ve accomplished something good.

If you’re not pissing someone off, you’re not doing life right – isn’t that what the saying is? It’s something like that, anyway. 😉

The Long Journey of Elderly Guardianship

Over a year ago, I did something I never thought I’d have to do. Because doctors were not helping me with my mother (who has dementia and is getting worse), I contacted adult protective services on my own to beg for help. The state came through, albeit an extremely slow process. They sent a wonderful man by the name of Mr. Hardin out to my mom’s home to evaluate things and he immediately agreed, upon meeting my mom and seeing the state of what I was dealing with (alone, as an only child), that I needed and deserved help in dealing with her.

That day back in January of 2018, I started a process of trying to get guardianship of my mother. Not something fun. Not a responsibility any human being really “wants” to have, but one that I knew in my heart was necessary. Now, we have reached a point where I need conservatorship, as well. And this is posing a problem at a number of levels. Alas, the doctors have all finally come through and given the state the information, documentation, and support that was needed to start a court case and here we are.

Except, today I found out that there is a thing called a “conservatorship bond,” and it’s something I have to not only pay for myself (which is hilarious because the reason for filing for legal guardianship and conservatorship for my mom is mostly financial – or the lack of finances, rather, for being able to put her into a better living situation with round the clock care or even in home care) but also something I have to qualify for based on my credit history. My credit history is not perfect, I’m not ashamed to say, because of student loans (which I have recently managed to get out of default, but still…). This could easily put a cramp in things, depending on the judge who hears the case.

I am anxious, I am stressed, I am worried, I am just almost at a loss. I have fought for so long to be able to legally care for my mother in the ways in which she needs care but refuses to allow me to care for her on my own, and in ways that a simple POA will not effect. And here I am, at risk of not being able to receive the legal help I need because of student loans and credit history and my disabilities due to mental illness (major depression, PTSD, extreme anxiety, etc.).

I just want to be able to take care of my mother and the law says, “you may not be competent.” Well, I’ve been competent enough for the last three years since my dad died to do so. And nothing has changed about that, except I am stronger and have learned so much about taking care of someone with her issues and illnesses. I don’t know what to do anymore.

I just want it to be over.

Hopefully within the next month I will FINALLY hear from a state appointed lawyer. Hopefully by the end of the year, I will be given my day in court with my mother to plead for the ability to care for her properly, make decisions she can’t, and make sure her bills are being paid (which they are not, at least not regularly, now).

If anyone reads this and has been in this situation or has any words of wisdom, I’d really appreciate reading them. I’m slowly coming to an end with my ability to see any positives about any of this, except keeping my mother alive…

New Year, Not a New Me

Hey y’all. What’s going on in the world of WP?

I’m just gonna put it all out there like it is. I have not been very good at keeping up with this site. I’ve been struggling to keep up with ANYTHING. But clearly, with the new year, it’s societally correct to “start over.” I’m not doing that – I’m just gonna work on the “continuing” of things.

My idea is to simply post.  I have NO plan as to scheduling, post content, or anything else (although I would like to share more of my music here, thanks to the inspiration and advice of my incredibly talented and successful friends Vincent Corver and Andrew Huang).

The best I can do is try to give myself the time and the space I deserve to express myself – that’s been a huge part of what’s been holding me back in the past year. I got back on Facebook for a minute but I just can’t deal with Facebook. There’s no point in trying to share artistically there, and everything else (personal page related) is a great big political downer. I finally just deactivated because I’m so sick of Trump just the mention of his name makes me throw up in my mouth a little bit and almost go into a panic attack.

So. I’ve been focusing on sharing creative links (my own and those of others) via Twitter and Instagram the past couple of days, with a lot more interaction and a lot more friendliness. And now, here I am. Just ready to dump some music and photos and words on ya. Kind of like the old me used to do. I like the old me pretty much the way she was. 😉

With that, I’m gonna shout out my friend Andrew Huang here by sharing one of his recent releases with you and ask you to check it out, and stay tuned for more of my own creative outbursts, as they come.

Thanks for sticking around. Happy new year, y’all. Wishing the best of everything to and for everyone.

Much love,

C.