Death, Grief and Inexplicable Nightmares

Ugh. Nightmares. I’m just about tired of them.

It does NOT phase me to be with someone when they die. I mean, I don’t see it as a negative experience. I’m good at being fully present for another person’s death. I’m good at opening my heart. Letting the energy flow. I’m good at holding hands and holding space and saying the words that you say to dying people, helping them to let go. Lord knows I’ve done it enough times.

It does NOT freak me out or make me uncomfortable to be around dying people. I know it’s part of life. It doesn’t scare me. It doesn’t make me feel weird or distressed.

In fact, death is one of the most peaceful things I’ve ever been around, in the moment that it takes place. It’s the getting there that is hard and sometimes scary and painful. It’s the living part that is hard. And the grieving. The being “left.” Dying? Dying is easy.

Everything goes quiet – even amongst all the noise, whether it’s chaos or just the whines and whooshes of machines that surround it. Everything goes still for that one, solitary moment…the one when you hold your breath as you wait to see if they’re going to take another one…and then, when they don’t…the release of your own long held inhalation.

I have seen them leave, and I always wonder where they go. What’s really next…? Are they still there, in a different plane of existence? Did they see a light? Did they know they were dying? Did they see something beautiful, or did they see nothing at all?

I mean, there are gross things about it – certain smells and things they do sometimes at the moment after dying, as the body releases them…it’s not “pretty” all the time but it’s not…it’s not that terrible to me, that moment. In that moment, they have something I don’t have: real peace, and the knowledge of what comes next. It’s relief. It’s that final endeavor of living.

I find death to be one of the most precious moments you can share with another human being. And so very often, it feels like a gift…

So why these nightmares. Why? My therapist says I’ve been through a multiple year long trauma that ended with holding another person’s hand as they died. I don’t feel like I’ve been through a trauma. I feel like I shouldn’t be having nightmares. Especially not ones in which my kid is dying.

Maybe I AM losing my mind. Maybe it’s the fact that I’m the only one left of that little family unit that was my family unit all my life. No grandparents. No parents. No brothers or sisters…or are there, somewhere? Maybe that’s it… The fact that I was adopted never phased me, until now. I never really had questions. I never really wondered. I just knew that I was blessed to have a home and to be loved. Not that I’m not now… I just…as we ease up on the one month mark since my mom’s death, something weird is happening inside of me.

WTF, dude. I don’t know…

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.))

🤷‍♀️

Upside Down

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

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

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

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

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

Wary Faith.

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

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

Because suddenly all of this just hit you at once.

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

You look fine.

You smile when you have to.

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

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

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

Then it just becomes too much.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s admirable to be like that.

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

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

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

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

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

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

Don’t be afraid of any of this.

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

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

via Wary Faith.

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.

Keep Hoping. 

Good morning, friends. I have spent the last couple of days really sitting with and holding my feelings and thoughts – some very deep ones stemmed from my last post and the response I’ve had to it from you at Instagram and via e-mail here. I’m so grateful for your expressions and to be on this journey of recovery, and life, with you. 

I am a lot of things. But one thing I am not is a quitter. In fact, that is often one of my flaws – I don’t know WHEN to quit sometimes. I’ve been in situations where I’ve just refused to give up or to give in or to let go, even when the situation or person has clearly given up on me. That’s a flaw and a strong point, all at once. I’m not a quitter, even when I should be, and sometimes that causes extraordinary pain in my life. But more often than that, it keeps me alive. 

What it really is, at its core, is hope. Even in the throes of depression, deep within me there is this hope. I have not yet defined it for myself, and perhaps it doesn’t need a definition. All I know right now is that it’s what drives me on, and I want to share some quick thoughts with you this morning on that. This has been the core element of my thoughts and feelings since my last post. 

I try so hard to encourage people not to give up because it helps me to remain accountable in doing the same thing. Sometimes, that becomes a slippery slope – but in the end, hope – false or not – is never any worse than wanting to die. 

I hear often, and used to believe, that false hope was as unhealthy as doubt. When it comes to depression, I don’t believe that at all.

My morning thought for today is this:   if you are struggling with depression and you have even an ounce of hope left in you, hold onto it with everything you have. 

Hold onto it even if no one else understands it, even if your hands begin to bleed and the hope itself becomes stained with the blood of your pain.

Whether it’s a dream, a person, a desire for your life or for someone else’s, whatever it is is, HOLD ONTO THAT HOPE. It’s so much harder without it, and to see the stains on it when you eventually walk (or crawl) through your depression and back into your joy will remind you, no matter what your hope is, how valuable that hope always was and will be. 

I believe that, and I believe in you.

Much love,

C. 

Depression: No Rules

I’ve continued to search my soul for an answer to my doubt and my unhappiness with sharing on social media, and this morning I posted another expression – this time of the place I find myself in as that original doubt and question evolves more into an answer. After I posted that train of thought, I received several messages from like minds and souls sharing their personal experiences and thoughts about it. 

One of the conversations (with a lady that has become a soul sister and close friend to me recently) led to someone asking me, “what do YOU want?” In the last year and a half, not a single soul has asked me that – and I was almost shocked to read it. I mean, I know a lot that this person is struggling with (including grief and chronic illness, similar to myself) and to be so aware of that and have them genuinely ask me, “what do YOU want?” both blew me away and grounded me a bit all at once. It’s been a long time since I felt that connected with anyone – at least with someone who had experiences of their own to truly grasp where I was. My truthful answer was, “I don’t know.”

Regarding life in general, that could be true for a very long time. But as far as here? At this blog AND on the actual Instablogs on Instagram I don’t know specifically what I want to do but I DO know that I want to continue to create and share – art/photography obviously, and my own thoughts, mostly – or, at the very least the much better expressed ideas of others about things that are affecting (or plaguing, as the case may be) my life.

Whether pretty and pleasing or dark and uncomfortable to take in, no matter the contradictions (because depression is good at those), I want to share it all – because that’s who I am, always have been, and always will be. I am best when I am open. I am best when I allow vulnerability and truth – no matter how it looks to anyone else. That’s how I cope, even though sometimes the pressure (self and otherwise) gets to be too much. I appreciate your support in that. I do, from the very bottom of my heart. 

That said, I don’t know what direction my posts (or my life, for that matter) are going to go in at this point. I don’t know where my heart is, especially in creating. It’s there, but I don’t know where. That’s why I started playing with some found footage from the farm tonight (which I can’t share here because my subscription doesn’t include video storage directly to the site and I don’t want to use YouTube). 

Anyway, I played around with editing and went with the flow…for a brief moment I found myself truly immersed and connected with my own being, and as I experienced that I asked myself why I had chosen that footage and felt so calm and creative about it. The answer? It felt safe. Safe is good right now. I play it VERY safe with EVERYTHING right now. And while it’s a necessity right now, I hate that. I HATE IT. Playing it safe destroys creativity and it erases the experience of adventures because adventures simply don’t exist. In this place, my wild woman is hidden away – and she’s the part of me I love the most. That’s another blog for another day…

I’m literally fumbling around and along in my life right now. Depression has taken hold, even as hard and as long as I have fought it off. But we all know, those of us who are touched by it, that it’s GOING to finally get to us. Maybe it varies each time it comes, depending on circumstance and current physiology and level of consciousness to it. Maybe it sneaks up behind you and gently, silently drapes its black cloak over your shoulders while you aren’t looking, taking you completely by surprise. Maybe it jumps on your back like a dog in heat as soon as it smells the scent of sadness or doubt. 

Or maybe, like me in this last year, you see it coming. You watch it closely and calculate all your moves as you observe and take notes of it’s strategy this go around. You try to bravely stare it down with all your might, daring yourself to stand firm and face it, truly believing that this time is going to be the time that you rise above it before it grabs hold. Yes. This time you’re going to make it – or dodge it, at least. But then, you don’t. You don’t make it or dodge it in time…because depression? Depression always wins that face off. 

So, now you just hold on with all your might as it slings you around and beats you into the floor, making a mess of every physical and emotional piece of you. Or maybe it’s very intimate and gentle with you, and it taunts you with promises of how much better things will be if you just give in to it and let it rape you, heart and soul. Or maybe it’s a silent and unpredictable demon for you, and you walk in fear of what it will do next. Me? All three, and a few more I can’t quite sort out with words yet. The point, though, is that you struggle. 

That’s where I am… 

Depression. Yes. That’s where I am…and you’re going to see it. I’m going to write it, and speak it, and create from it – whether that looks pretty and light or scary and dark. 

I’m not going to operate under the theory that not speaking it makes it not true. Depression doesn’t work that way. It doesn’t buy the affirmations; in reality it just hears lies and uses them against me. It may be different for you, and that’s ok. But that’s what happens for me. So I’m not going to pretend I’m ok, because it’s OK not to be OK. And I want YOU to remember that if you’re in a similar place. 

You’re not alone. I promise you. And pretending you’re OK when you’re not in order to leave an image of love and hope untarnished DOES NOT HELP HEAL DEPRESSION. In fact, that’s the only consistent “rule” I’ve encountered across the board of myself and others I meet who are counseling others, living with, or struggling with depression. People who do not understand actuality of or have never experienced depression in it’s deepest, rawest, soul-eating form will never be able to grasp this. But for those of you who have messaged me and said, “why do you always apologize when you don’t post positive stuff or don’t know what to post?” You do get it, and YOU ARE RIGHT. We must be true to ourselves. I thank you for that reminder. 

Depression is simply not pretty and it’s far too romanticized in our society today. It’s scary, and it’s messy, and it’s downright uncomfortable (and ugly some days). Some days, you could smear all the love and hope in the world over yourself and wrap yourself in all the most beautiful and positive quotes, and you’ll still be scared, messy, dark and ugly inside and to the core of yourself. And that’s OK – because that’s depression, and it’s a process; for some, a life long one. 

In discussing this with other depressed people, I heard a lot of them say, “but why DO you try to stay on the more positive side of things?” Well, in a general sense and even in lacking religious faith, I want (choose) to try to look on the bright side – even if it’s with sarcasm and dark humor. For me, I know that if I lose hope altogether, I will die. My depression WILL KILL ME. Of course I have my (regular, lately) moments of existential anxiety and darkness and cynicism and anger. But mostly, in my heart? I hope. I love. I want to see and to do good. 

So yes, I’m guilty of believing and sharing a lot of fru-fru stuff. I like the fact that I have found a sort of balance between gentleness and toughness in my self and self-expression, and that I can be honest enough with myself to embrace both sides of who I am.  But if that doesn’t work for you? That’s OK! Forget all the self help, new age, love and light mumbo jumbo if it doesn’t work for you! It doesn’t work for me every second of every day or even every day or week or month at this point in my life (although I know I’ll still be sharing from that place within me on the days when that side is winning). 

We are complex emotional creatures, even at our best. Adding depression into the mix of who we are complicates things greatly for most of us who are affected. It’s not a RULE that you need self-help or spirituality to cope, or else you’re a bad person. In fact, there is no set-in-stone list of rules that we can all follow that will work 100% of the time for all of us in the same way to help us to cope with and/or overcome depression. NONE. Not coping that way, or without religious beliefs, or even without a smile on your face, doesn’t mean that you aren’t still filled with love, hope, purpose and spirit. Just because you forget it doesn’t mean it’s not there – kind of like those dirty dishes from two days ago or the laundry you meant to fold last week. It’ll keep. 

It doesn’t make you a negative or unworthy person, and it doesn’t mean you aren’t making or going to make progress, to deal with depression in a way that others most often criticize and judge. It just means that you struggle with depression, and that’s a beast that only those who have battled it can understand. We must embrace ourselves and whatever we are feeling at least long enough to try to grasp WHY we might be feeling that way and whether it is helping us. At least, for me, that is the only way I can get through most days. 

The other part of that for me is absolutely the ability and the means to express myself, regardless of what that expression is on any given day or in any given moment. I encourage you to express yourself, too, if you can in some way do that, and I promise you that I will try my best to practice what I preach, post from my heart, always, and walk this often contradictory cliff’s edge with you. 

I love you. 

C.