Looking Forward (Or Deja Vu?)

You never know where the road is going to take you. Be careful with yourself. Don’t abuse yourself or others, or take your body (or life) for granted.

One day you may be in a situation where you don’t know what’s next for it – and whether you believe me or not, or like it or not, or think it’s a dramatic statement or not, I don’t care – it’s a terrifying and uncomfortable place to be, especially when you have small children.

It’s funny how you can be considering the future, looking forward and not behind, but feel as though you are watching your past happen all over again – and you never expected it and thought you’d done everything to prevent it from ever being this way again. Well. When it comes to the body, and to life, really, sometimes things just happen.

Sometimes things happen and they’re scary and they’re hard and you can’t talk about it because…well, no one will understand and you don’t want anyone to act a certain way, or maybe you just don’t want to be vulnerable because you’re already possibly more vulnerable than many people assume.

You don’t mean to be vague but you are just doing the best you can to process your own existence – and you have no clue. None. Not even a tiny one. You’re just waiting. You’re waiting because it’s deja vu and you know what happened then; but, it’s also a different experience and you know it’s “now,” not “then,” but you’re gun-shy from the last experience…so time is the only source of answers, if time or answers even exist.

Life is like driving a car. You can drive all you want, but you never really have power or control over anything. Forces far greater than you do – and sometimes they’re not kind. And, if you think you do have everything under control? It’s an illusion.

Don’t delude yourself. You’re going to be in a world of hurt at some point, if you do. Don’t forget that when you dance, eventually you have to pay the band.

Don’t assume you know people. Don’t assume you know what’s going on in their life. Don’t judge based on what you THINK you know, because in reality? You don’t know squat except about yourself. Focus on that, unless you do know facts and you can be of some emotional or physical help in someone’s life.

That’s what the last few years have taught me, in being treated like crap, and allowing myself to be used by people and abused by the medical system. Did it make me stronger? Wiser? Yes. Did it hurt? Badly? Also, absolutely yes.

Don’t be a selfish jerk. Do good. Be gentle. Be compassionate. Be kind. Do all those things for yourself and for others. Make it a great day. I love you all. ❤️

~C.

You’ll never know…

…until you have actually and fully been there.

Until you have actually walked this road in a way that leaves the soles of your shoes worn out and developing holes, and your feet blistered and bleeding twice as much as your heart pumps through you and until you have not only seen but had no choice but to actively participate in the sights and scenes DAILY, because there literally was no one else, for so long that you feel like you’re in a Stephen King novel, no – you will never know what it’s really like.

How it can wear you so thin that it nearly destroys you, the way water seems to work like acid and melts cheap toilet paper.

How it can tear you down to a level that you, as compassionate and kind a person you are or try to be, think, “the next time someone tells me I should smile more, or I should look on the bright side (which is what? That eventually she’ll die and I won’t have to do this anymore?) I’m going to punch them in the face.”

How you start avoiding people because you’re sick of their hypocritical judgments and comparisons, OR the way they pretend to understand when you know good and well they have no clue so you just stop talking about it and pretend it’s easy and everything is fine…

100%. Until you’ve done it, you’ll never understand completely what it’s like. I shared a lot of our journey. Even then it was only a fraction and what I did share was picked apart by completely irrelevant, inexperienced people. But I will keep sharing this until we have real reform and raise the standard of care for caregivers and their loved ones with dementia. (Thank you, Martina.)

When my mom died, it broke me. It wasn’t the grief that broke me, it was the RELIEF that broke me. Because I had no idea what to do with it. And I felt guilty for feeling it in the first place.

Finally being able to breathe and stop and rest after SO LONG of being a full time care giver going between two homes and three people (wait, four – but I never really thought of myself, lol) and dealing with doctors and being sick myself…?

THAT almost killed me.

I’m not exaggerating or trying to be dramatic or draw attention, which is what people always love to say when you share thoughts like this (which reallllly doesn’t help so just shut up because that kind of thing can drive someone over an edge you will never understand when they’re grieving loss after caregiving).

I just finished writing a whole chapter about this. Maybe I’ll share it via my blog… For now, here’s the thing I want you to know and remember:

If you’re in a situation like this or are grieving after a situation like this, know that you’re not alone. Know that there ARE those who see you and feel you because they’re there, too, or they’ve been there before.

I pray not one of you ever has to go through it (or go through it again).

If you are forced to go through it, I pray you get the resources you need (financially and otherwise) sooner than a month before your loved one dies because the only thing that finally saves the day is hospice.

I pray if you do face this situation, you have less people than more coming at you with what you need to do and how you need to act but NEVER actually doing anything to help you do what they think you should do and regularly acting the same way you’re acting despite not being in your shoes and instead having everything they could ever want or need.

And I pray that if you ever find yourself in those shoes, you give yourself grace and you forgive yourself daily, before the day begins, for the fact that you’re never going to be perfect. You’re not going to get it right and keep your cool and manage your emotions well EVERY DAY. You’re just not. Period. So accept it and be gentle with yourself and just keep doing the best that you can. You’ve got this. You really do. You don’t think you do or feel that you do, BUT YOU DO. 🙏💜🙏

And if you’ve never been there at this level and never have to be? I pray you don’t take that privilege for granted. Because you ARE privileged.

💜💙💜

Don’t Grind.

Sunrise thoughts and a thing nature taught me a long time ago. Spirituality and self-discovery go hand in hand, and they work the same way: both are a never ending journey. Wax on, wax off. Learn, unlearn. Learn again. Change habits. Become, unbecome. Become again. Know better, do better. Love yourself, love others. Rinse, repeat.

And this idea so many people have of grinding? It’s insanity. Grinding is NOT what you need to be doing. The definition of grind is to wear away, to destroy. You are killing yourself to do what? Have more stuff that you don’t need? Make other people happy? Working to the point of taking care of yourself is one thing. “Grinding?” Totally different thing.

At some point, you have to decide that you’re going to enjoy what you have while you’re here to enjoy it rather than constantly want more or be dissatisfied in life. In fact? That is exactly why people are dissatisfied in and with their lives. That’s why people are not really and truly happy – “at the core” happy.

It is really because they are doing one (or both) of two things: holding on to what has long been over and carrying anger and bitterness with them in everything they do and doing the things they do for the wrong reasons, or trying to maintain a certain life that isn’t really living. A truly happy life is one that can maintain itself with just a normal amount of effort, because there is balance.

Grind yourself down with a constant focus on one thing – even something you love – and you will no longer be balanced. You will no longer be strong. You will no longer love that thing or that person. You will no longer be you. You will wear away every beautiful, unique thing about yourself and end up exhausted, aching, empty and bitter.

Sunrise.

Please don’t grind. Work hard, but don’t grind. Do more of what makes you happy. Do it from a mindful space and conscious heart. Awaken yourself to ALL that life has to offer. Pro tip: it’s not found in material things. It’s not found in excess. There is no such thing as security – any of us could lose everything in a single breath. No, it’s not something you can hold. It’s something you can feel, and it is found in the space between breaths. You can find it there no matter where you are or what you’re doing or who you’re with – try it, and you’ll see.

No matter what you’re doing, throughout the day today randomly become conscious of the fact that you are breathing. You can still be doing whatever you’re doing – just be aware. In that silent, focused pause between breaths, remember that one day that will be a permanent situation. One day, there will be no breath. One day you will CEASE TO BREATHE, and therefore cease to have that moment. This moment. Any moment. Every moment.

It might come sooner that any of us think, that permanent space between breaths. You never know… Appreciate everything. Even the pain is teaching you. It’s showing you what not to do. It’s showing you what your body needs you do, what your soul needs you to do, what your higher self needs you do.

Do good. Be gentle. Be compassionate. Be kind. Do all those things for yourself and for others. Have a beautiful day. 💜

The Mighty Oak Will Kill You

I mediated this morning on something that I told my child last night when he asked for advice about why someone in his life did what they did and about why it hurt him. I told him that this the person who had hurst him was not yet coursgeous enough to heal himself before he broke someone else, and that it hurt him because he cared about this person.

He depended on this person to not hurt him. He believed in this person. And for a child, that’s really scary and difficult because as a child you’re still learning to process emotions and understand what emotions are. It takes maturity at multiple levels to remain calm and to not hurt a child with you words. I suppose the same is true for adults – especially the way we treat and speak to ourselves.

So, I went on this very deep, very enlightening almost hour long soul journey with my own meditative backing track (coming soon, shameless plug) and it was one of those meditative experiences where you’re doing your meditative thing (eyes closed, body relaxed, going within your deeper, inner being and connecting with it) and it hurts.

It burns. It stings. It aches. Tears roll down your cheeks even though your eyes are closed. You feel every needle the porcupine of life has shot into you. But you keep going and you find yourself at the edge of your inner self and inner peace and you step into it, and you bathe in it’s light. While you’re there, you see things about yourself for what they are.

What did I see within myself? That being strong doesn’t require being fearless – it’s facing the fears that create the strength in the first place. That protecting yourself doesn’t require meanness, it requires patience and love. And, that being guarded and angry doesn’t deflect the things you don’t want to see as much as it blocks your blessings and wastes valuable energy and time.

This is hard. This process is one we are faced with numerous times in our lives. My son was faced with it for the first time last night, and I shared some of my experiences with him and it helped me to remember things that current shadows have been hiding: We learn as we go, but we don’t learn unless we put in the effort to do so.

We all know it takes more strength to be kind and to love anyway than to run. But if I didn’t run from my demented mother who randomly beat me with a cane because of her disease, if I handled that and still did my job as a daughter and in the role I was thrust into as her death doula…and I did it mostly on my own (because I was dealing with absent people and also still blocking spirit and blessings for so long), I can handle just about anything, right?

((Please note, there is a difference between running from yourself because of self-doubt and walking away from toxicity because of self-confidence. There’s always two sides to these memes. There’s always two sides to everything – and often a lot of gray.))

Personally, I am really struggling with a lot of negative and toxic emotions toward my body right now – and with a lot of negative and toxic energy surrounding me. The things my body and I have faced in the past two years have been unforgiving at times, almost suffocating at others. They’ve been so difficult, and continue to be in some moments. But that’s the thing. It’s moments. You learn to rest in the moments that you have to – especially in the moments that you NEED to – but not give up completely.

You learn to be ok with the fact that venting your fears and anger and concerns about things is NOT always “just complaining” and it’s not being ungrateful. It’s COPING. It’s figuring things out. It’s keeping your own balance. Because you can’t thrive in ANY way without balance. You learn that a response of kindness and empathy and gentleness is more powerful than a response of coldness and lack of depth.

After all, look at nature – what’s more beautiful and pleasant? The colors, the beauty, and the warmth of spring and summer and fall or the harshness and bone chilling cold of winter? Can winter be beautiful? Sure. But is it as pleasant and comfortable and conducive to joy? No – that’s why so many people struggle with seasonal affective disorder.

You very literally see that the people who told you throughout your life that you have to be good with yourself before you can be good with anyone else, and that you won’t have true peace until you do the work to heal yourself, was telling you the truth. You won’t ever find peace of mind and true and lasting joy in your soul until you learn to sit in the darkness and kill it with your own inner light and magic. And you have that. You ARE that. You are magic. You are made of literal “stardust,” for Christ’s sake.

Shine like you’re supposed to. Don’t let your circumstances and your old wounds or should have could have would haves or even the opinions and actions of others put out your light and stop you from sparkling like the diamond you’re supposed to become under pressure. If my mom’s stuff taught me anything, it was the harsh reality of that. Pressure and pain can grow you into a brilliant diamond or petrify you into a bland and plain stone.

Don’t let it be the latter. Don’t let your heart become petrified and your mind become stagnant. You aren’t here to be a rock, or you’d have been created as a rock that just lays there on the ground and does nothing. You’re here to LIVE. Not just survive, LIVE. In order to do that, you have to mind the diamonds – you HAVE TO DO THE WORK.

As I find myself struggling with my body, and with random triggers of mom grief (that’s a whole other blog) I’m not making the same mistakes I’ve made in the past and choosing to hide away or beat myself up (and thus, others). I’m going to continue to grow and one day I’m going to bloom, and y’all are all going to watch me do it. Actions speak louder than words, even as loud as words can be screamed.

I’ve been here before but I’ve learned and grown. After my last episode with my health, with depression and the thoughts that ran through my head, I’m terrified of only one thing: dying knowing I haven’t given all I could give or done the work I needed to do to live well and in peace and thus bring peace and joy to others. But, that work I can only do that for myself, with my own choices and actions. It’s a conscious choice we have to make over and over in our lives.

It was a conscious choice with a lot of conscious effort behind it to fight my body’s BS before, to fight depression, to fight my self doubt, to heal traumas and wrongs inside myself – especially around my mom so that I could care for her when there was no one else to do so. The shadow work had to be done. I took my little soul chainsaw and cleaned out the vines and the poison ivy and the dead trees of my past and my experiences and do you know what I find, over and over again? Baby trees. New growth that needs room to become.

There are stumps and scars in the garden of my soul that still feel tender sometimes but they remind me that I CAN heal and I have many times. The more times you go through this process, the more you learn to listen to spirit and see the signs and open up the natural spiritual gifts that we all have, the more you realize that nothing is ever in your control and that most of the time, when you stand like the oak, you’re standing in your own way.

You realize that when you break, that oak is gonna fall hard and it’s gonna crush anything in its way, and you’re going to be the one who has destroyed all the good you couldn’t see while you were fighting for more more more and fighting to look strong and hide your truth and avoid other people rather than to be your authentic self and to SHOW UP, for yourself AND for those you care about.

Vulnerability bends. Vulnerability can move with the moment – it can handle the pressure without breaking. It gives, it sways with the energy. And when the hurricanes and tornadoes and even the weight of the winter ice come, it can withstand them, because in reality? Softness is stronger than hardness when it comes to humanity and the soul.

It’s a metaphor we’ve been presented with eleventy hundred times in eleventy hundred ways in our lives: The oak is the ego. The willow is the soul. Don’t let your ego break you and those you care for. Don’t let your ego block your blessings and destroy your soul. Your peace and your heart (and the peace and hearts of others) are worth way more than that. Keep it open.

The more you give, the more you receive – even if it doesn’t come from where you are directing it. Life will surprise you. Let it surprise you with gifts, not problems. And remember, you create so much of both in the tiniest actions and choices you make.

Un-expectations. | Deep Love

First of all, this post is not an April Fool’s joke. That’s just how ironic and hilarious my life likes to work out.

I saw this and it led to thoughts. Since I have nothing better to do besides lay here right now, and read and write, I thought, “let me share my thoughts…”

“Deep Love

You cannot touch the depths of another until you have touched the depths of your own soul.

If you love yourself for your achievements, your current assets, the way you do things and handle the world—and despise yourself for failure in the same—it follows that your relationship with another will also be transient and superficial.

To achieve deep and lasting love of another person, you need to first experience the depth within yourself—an inner core that doesn’t change with time or events.

If it is the true essence, it is an essence shared by the other person as well, and deep love becomes unavoidable.

Rabbi Tzvi Freeman”

The thoughts this led to on this unexpected day?

I may not have time for material things anymore. And I’m ok with that. All I’ve ever wanted was to love and be loved – not necessarily romantically or in any specific way…just respected. And right now, unrelated to this shared post, really, I’m in love with my doctor in a professional way because he is being forthright, knows not to hide his concerns from me, and is concerned to the point that he doesn’t want me admitted because of my immune system so he’s given me tools and explained all the precautions so that I can be at home.

Instead of scaring me or belittling my intelligence or undermining my own concerns, he makes me proud to be intelligent and aware and doesn’t answer my questions with phrases like, “you just let me worry about that,” or, “we don’t need to get into definitions or science.” He WANTS me to be at the same level as him because if it comes down to a person’s life, why wouldn’t they? His job is to care for me and to do everything in his power to help me to recover. He doesn’t take me for granted as just another patient. He knows my body after all these years but he also knows I know my body better than anyone does and he respects that.

He asks me more questions than I ask him, and we work TOGETHER – it’s not like other doctors people tell me about that they’ve dealt with. It’s not like, “I’m the doctor, do what I say.” It’s more like, “you’re my patient, let’s discuss options and treatments and risks and concerns and fears and how we can combat possible and current difficulties.” He makes want to fight, he makes me better. Even just his voice on the Emergency On Call line this morning took me from panic to immediate calm. “Be at the office at 8, we’re going to handle this in the office before we do in the hospital.” He fights for me. Because of that, I feel strong enough to fight for myself.

And, we laugh. A LOT. Darkly. 😬🤣 He understands me (and enjoys my personality) that way.

THAT is the kind of relationship you pray for with your doctor. He loves his patients deeply – because healing and helping them is his passion, and purpose – not just his “job.” I may be very sick and dealing with some possible very high risks, but I am also so very blessed. 😭🙏🙏🙏

I learned…

You have the power to overcome conditioning –
especially conditioning you’ve done to yourself…
Patterns.
Obstacles.
Regrets.
Even fears.
It takes bravery, but it rests within you.
Be compassionate toward yourself,
Believe and see – you have the ability to heal the wounds that bring your anger,
that slice you open,
that feel like ghosts who just won’t follow the light and leave you be…
Forgiveness of self,
understanding is yours…
Now take the reigns and seek the changes,
do not doubt,
do not fear.
Know that you can change these patterns –
thoughts,
wants,
expectations of self…
You can do so much,
you can pray so much,
you can love so much –
others and yourself.
But
life will always happen
on life’s terms.
There is no other way.
Understand that no matter what you have chosen
or what you choose,
what you know,
or think you know,
what you wish for,
or what you loathe,
life will rise and fall,
come and go.
There is true peace to be found,
and felt…
but only within yourself,
and only when you let go and allow it…
only when you give yourself the opportunity
and the gift you need…
Only you know what that is.
It’s the only way.
~C.

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.))

🤷‍♀️

The End of the Road (Last Blog Before My Mother Died)

TW: the dying experience. Do not read further if you can’t deal with that kind of reality, or if you’ve had a recent loss that this will gnaw at…







Seriously, I’m going to share this reality so don’t keep reading if you’re not comfortable with this type of thing. This is my coping mechanism. To write. To share with those who can handle and understand it. To feel like my support system is with me…







This morning around 3:30am my mom’s oxygen started dropping. First it was 92. Then it was 90. Then it was 88. Then it was 85. She kept yanking the oxygen away. I stuck it in her mouth until the higher dose of morphine kicked in and she relaxed. Then, I put it back in her nose.

I called the after hours line. I was told I was doing everything I needed to be. I mean, it’s kind of common sense at this point, after the others, for me – but that doesn’t mean adrenaline and norepinephrine don’t fly and dopamine and seratonin don’t plummet…and you need that reassurance because you second guess. You feel responsible for more than comfort. You feel responsible for the pain, too. You can’t help it.

I cranked the oxygen up to 3. I started giving half doses of morphine every 30 minutes. Her chest would rise when she gasped, then cave in. Then the fluid rattle started again with her shallow breaths.

She would draw up in a fetal position, moaning and gasping, still with oxygen in her nose but oxygen levels still rising and falling at will because of the mouth breathing and the breath holding and the inability to get enough oxygen with the fluid.

She has not eaten in 12 days. She has not drank in 3 days. She is in the final phase of the dying process. I knew that. I know that. But nothing prepares you for that. I am grateful that she is home, and that I moved here. I am grateful that it is not the nursing home I fought for, or the hospital, where I likely couldn’t be with her…where she would be alone.

I have laid with her – some would say a gift, and I agree…though in the moment it doesn’t feel like one. I suppose it will one day, just like with both my grandmothers, my Daddy, and Dorie, and pets… I held her hand. I cried silent tears, watching her face grimace and her eyes open with the moans only to reveal cloudy, lifeless eyes. I waited patiently for the nurse.

The nurse came at 8:30. Upon assessment, the things are happening. The limbs are cooling. The bp is dropping. The heart rate is rising. The temperature is rising as her core fights to hang on. All the things.

It could be today, it could be three days. It could be a week – probably not longer than that, because of the lack of food and fluid. I have chosen to make her comfort the priority, with oxygen, and liquid morphine and Ativan. Myself and the doctor have chosen to forego the feeding tube, and IV fluids. There is no point in drawing it out, and a DNR is a DNR – all those things are at this point are life support. She doesn’t want that. It’s documented. I will not allow myself to feel guilty for those choices. She made them long ago – not me.

But it’s not easy. It’s not a happy choice. It’s not a good choice, in many’s eyes, I’m sure – but for her it is the right choice. And I will live with having to make it for the rest of my life. But I will also live for the rest of my life, however long or short that may be, knowing I’ve done all I could and what we felt was best for her. She has fought me tooth and nail, even changing the locks to keep me out of the house and away from her business, and now she groans when I’m not there. My, how things change. How they heal. How they induce growth. How they make you a different person.

I have been many different people the past year and a half, through the worst of all of this – some not always graceful, some quite angry, some extremely depressed…and now, regardless of the amount of time left, I feel nothing but…strength. Courage. And love.

I will see you all on the flip side… Love one another. Be kind. And live with an open heart. 🙏❤️