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.

💜💙💜

Lesson From a Nope Rope

I believe this is a hybrid rattlesnake – the product of a timber rattler and a diamondback. I could be wrong.

So, this is raw. I never edited any of this. I have so much b-roll stuff from our hikes and stuff and I pick and choose bits here and there when I produce something. This is some of that footage that I came across when getting my stuff together for the project I’m working on.

I’m glad I came across this. I’d forgotten about it. It reminded of something about myself that I think a lot of people tend to misjudge. Don’t be led astray by my mostly nice, friendly, patient and overly kind demeanor. Don’t think I’m as ignorant as I might look. Don’t think I don’t know things just because I don’t say them out loud. I’m kind – not stupid. I am not afraid of much, not even poisonous snakes in the grass. Thing is, the worst snakes in the grass are people – it’s really the wrong phrase to use to describe a sneaky, lying, abusive human fool. Kind of an insult to snakes, if you ask me…

You see how calm this nope rope is? Maybe it just ate (doesn’t much look like it). Maybe it was a little cool (doubt it because I was sweating like crazy – this was a humid, warm July morning). Actual snakes don’t want to bother you. They really don’t. Maybe this dude just didn’t feel threatened by me. Animals rarely do. Only God knows why that is. But I can tell you this:

I wasn’t afraid of getting close to this guy, even if maybe I should’ve been, but I also was not stupid enough to try to handle it. No – I’m only that stupid when it comes to people. I never used to be the “once bitten, twice shy” type. I used to let them strike me and just forgive and pretend things were fine. I would give a person every reason to believe in me and make sure they knew that I still believed in them and cared about them. I would be willfully ignorant to the point that I was breaking my own heart.

But you know what people do? Even “family?” They don’t see that. They don’t see your heart. They don’t see your actions. They don’t see what you do for them because you love them. They just see what they want and take it from you and go on. Many times they don’t even need be provoked. They’ll strike out of the blue, with no warning at all – unlike this guy, who would have at least warned me. Thing with people is, you have to let them do it more than once. So don’t let them, because if they continually behave in ways that hurt you and refuse to respect you? They’re never going to change. Have no doubt – I have finally learned that lesson.

Today? Once bitten? I’m absolutely going to be twice shy. Still kind, with the same heart beating inside of me, but I’ll never trust you again. Once I’m done, I’m done. And if I ever reach that point with you, you have only yourself and your own behavior to blame. Just ask my father in law. His life wasn’t in vain. He taught all of us this lesson.

When Mother’s Day Hurts

My mother in law was just here and I know what’s wrong with me – it’s Mother’s Day. It came out of nowhere – like a deer in the night trying to cross the road or a tornado that has no sign of existing but suddenly does, and drops directly onto your house. And of course this has nothing do with her or her bringing it up – it’s just the way I feel, and that’s mine to own.

Mother’s Day has been a big deal for me all my life. When my mother in law mentioned it was like I felt a knife in my heart, all the way through my back, and radiating throughout my whole being. I hate feeling so deeply. I wish I didn’t feel at all sometimes – I would rather be dead inside than feel at the depths that I do – for many reasons, but this is a prime example. I wish I could be heartless like other people are sometimes.

My adult lifelong best friend and I used to “uncelebrate” it, Mother’s Day. Different reasons but…that was our whole thing every Mother’s Day. It got super hard after she died because she knew all the details of why it was so difficult for me and she got it – and vice versa. Now, with my mother gone, and this idea I have in my head that my birth mother is probably dead, too, and all hope is forever lost of finding her – that makes me have even more questions…I think about all the miscarriages…and it all hurts…

I know this is like three weeks away but it’s like…I can’t explain. And I wish I could. I wish I could find words. I wish I could talk it out. Write it out. Music it out. Art it out. Ride it out. Run it out. Drive it out. Kill it. I feel like a shell. And yes, of course, it will pass. But please be kind to those who are hurting on Mother’s Day.

Don’t remind them they have at least the child/children they do (that’s actually feeling like the HARDEST part of this year’s upcoming Mother’s Day for me – BEING a mom on Mother’s Day, because I don’t want to be reminded of it and I feel guilt for that, on top of everything else I’m feeling). Don’t minimize it. Don’t belittle them. Don’t try to fix it, either. Just let them hurt and be there for them. Don’t pour salt in their wounds by saying all the cliche things. They know what they still have but it doesn’t invalidate what they’re missing, or what they’re feeling.

I know many of you are going to struggle with Mother’s Day this year – and many of you have for years already. Please…just be kind to yourself. Try to be graceful with yourself. Don’t go to the what if’s and the I should haves and all the thoughts. Let yourself grieve whatever you need to grieve. Honor your heart and your feelings in whatever way you need to (for me it’ll likely be writing and/or music). Just…love yourself gently, and try to remember that you’re not alone. ❤️

When Mother’s Day Hurts

#SpreadMusicNotHate No.2

Day 2 of the #FavoriteSongsChallenge to #spreadmusicnothate: Moonlight (Quasi una Fantasia) in C# (from Beethoven’s 14th Sonata), performed by Fazil Say. I love this version. It’s a favorite classical piece, but this version is beyond moving because of who he is as a musician….the way he plays it…

I love the way he connects with his instrument…how he treats the music as though it is a tangible, material thing. It’s as though he is not only feeling but also respecting the beauty of what is around him, inviting it into existence, communicating with it, cherishing it, unaware that he is creating it with his tool (and what a tool those Steinway and Sons pianos are) and his skill and gift. It’s all an extension of itself, connected by his innermost being. He breathes it from depths only the sound can express, yet it is almost like you can see the music in a literal sense. It’s so ethereal.

I’m moved. What else can I say. I know this sounds wild to a lot of you…but it’s just so profound to me. Anybody can play – just like anybody can take a picture – but it is the heart and the life and the love of the art that makes it different from what “just anybody” can do. This is how I feel with music… he personifies what happens inside me when I listen to it, or make it. He is literally breathing it in, absorbing it. Beautiful music feeds my soul like soul food feeds my stomach. LOL

Beethoven is one of my favorite classical musicians/composers and Moonlight Sonata is one of my favorite of his works. I’ve never had chill bumps from it the way I did when I listened to this and saw him interacting with the music with such grace and feeling. ❤️

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.

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.))

🤷‍♀️

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…