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…

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.

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.

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.

There is No Logic in This | Dementia

Yesterday was the worst day. I don’t know why, but life always seems to implode (or explode) with everything at once. Yesterday I battled with my own body and began to battle again with my mind and my thoughts. I laid down in the afternoon to nap and I missed a phone call from my mom.

About two hours later I was awakened by a phone call from the hospital. We rushed up there and were told that she had been wandering again (not so much wandering as making more poor decisions, having it in her head that it was a good idea to walk 3 miles to a store, which she has attempted to do several times since the beginning of this year). She has so far not fallen on these little escapades but this time she made it about two or so miles before she did fall.

I believe that she passed out because she refuses to eat properly and she’s also very weak and feeble to begin with, so I am not surprised. I have begged her not to do this, making that very argument and explaining how dangerous it really is. In fact, the last time, a neighbor picked her up around the same place she fell yesterday and she was walking IN THE MIDDLE OF A TWO LANE ROAD with curves and fast traffic.

I also believe that she hit the pavement so hard that she had to have knocked herself out because she hit the pavement hard enough to bust her chin all the way across and knock all of her teeth out of line as well as broke two teeth. She has a major swollen bruise on her temple and severely bruised ribs as well as scrapes and contusions on her hands, arms and legs. Today she looks like she lost a fight with Mike Tyson.

I’m not sure how long she laid there before she called me because, again, I don’t feel like anybody could take a blow like that without being knocked out for at least a short period of time, but eventually she tried to call me and I was asleep. #guilt Three people passed by to offer help – she refused help so the first two just drove on without even calling an ambulance, while the third person refused to move her and called an ambulance but then left before the ambulance arrived.

There was at least a 40 minute time frame between the time that she fell and the time that an ambulance arrived which means that she laid on the side of the road (possibly in the road for a period of time) for that long miraculously not getting hit, robbed or otherwise hurt.

This is the final straw for me and I can no longer accept the fight that I have been fighting for so long to prevent her from living alone. I will no longer allow – regardless of the fight to come with her – her to live alone. I will be raising hell with the doctor and I will sue on my own if I have to for guardianship. I have had DHR on my mother‘s case for over a year and two months and still have had no appointment with a lawyer – nothing.

The state is a waste of time and the American medical system is a waste of time. The doctor at the ER understood my concern and tried to find a way to hold my mother for at least 72 hours whether it be a psych eval or a need to be monitored physically but because she answered three or four questions correctly like “what is your name,” “what year is it,” and, “who is the president?” and because her vitals were good and her test results were negative for any breaks or internal damage, she could not be held against her will.

Now, go back and read this story again and tell me why, just because she says “I’m OK,” she could not be held. What kind of decision making and what kind of serious ridiculous danger does a person need to put themselves in – she is clearly a danger to herself and needs to be evaluated – yet there is no ability to hold her? She needs to be given the proper care and I do not have the power to make that happen because I have no legal power when it comes to my mother.

She refuses to offer me any leniency or cooperate with me and I am done with being put in the position of a doctor telling me “you need to take care of your mom” and me knowing I need to do certain things to take care of my mom, but yet being pushed away and out of the picture by my mom and the doctors – it’s a total cluster fuck and I am about to lose my mind.

If I thought I was losing my mind a year ago, well I had no idea how bad it could really get – and I know it’s only going to get worse.

Hello depression, extreme and uncontrollable anxiety and overwhelm. Welcome back.