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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.

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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.

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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…

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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.

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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.

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Respect her.

She is not there for your convenience,

she is there because she wants to be.

If she makes time for you,

respect it.

It is a gift.

If she talks to you,

don’t just listen.

Hear her.

She wants to be heard.

If she touches your heart,

carry her there always.

She is not random chance,

or a gamble.

She is not a toy.

She is light…

not just a random spark

in the ether –

she is the fucking sun.

She is silver light

on the horizon…

~C.

 

 

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It is 6:19AM. I opened my eyes to a faint light beginning to creep through filmy windows and as I began to awaken, I awakened to a realization that I have lost all faith in the what we call “the American healthcare system.” It is willful blindness to believe in it.

There are great people who work for it – people who care and give their all to make sure the sick are well attended and made comfortable. But they work for the system – a system that doesn’t allow them to follow their heart, only the money trail. A system that doesn’t allow them to make decisions based on their gut but forces their hand to do what the rules say is allowed and not what is right.

Now it is 7:06AM, and the light is bright enough to make the film on the windows seem to disappear. The film over my eyes, however, has not, and will not. That said, I am too tired and too weak to fight today.

The pain in both my heart and my uterus hold me down. I don’t mind being here. It’s the place I’ve spent the most time and it’s gotten pretty comfortable. So now, as my eyes grow heavy again, I bid my faith and my life as I know it a bittersweet goodbye.