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…

I’m Done. (Re-Blog)

I’m done, too…. Have been for quite some time now. I think it hit me when I worked so hard to repair a friendship and support the person’s new life not realizing or fully accepting that we weren’t really friends at all until I was accused of “stalking” because I added the person’s new boyfriend as a friend on a Facebook “without asking permission.”

Who the hell asks permission to be friends with a friend’s boyfriend if they are truly friends, especially when they are 30+ years older than you and it is extremely clear that you have zero interest in drama and only have an interest in getting to know and support people?

That experience taught me that it is very rarely about you but almost always about some insecurity or issue that someone else has when they do something completely ridiculous like that. I’d done nothing but prove myself forgiving, trustworthy and kind up to that point but that day, in the blink of an eye, I was done.

I was angry, and I was hurt. I’d done nothing but listen to this friend go on about not wanting to disappoint anyone by going on with life and had been encouraging and, I hope, uplifting about it all. I gave a hundred percent to making an effort to support this person’s new life and to encourage them to live it however they saw fit to live it, not worrying about the judgments of others.

I felt insulted and used as a human being. And, ultimately? It had very little if anything to do with me. It had to do with that person’s own lack of trust, whether in me or the boyfriend or whomever. It had to do with their lack of actual concern about me, and that day that lack of concern slapped me in the face out of nowhere.

That day, I didn’t give up on the person, I finally saw my own self worth and let that person go, like I should have done all the other times that person had walked out of my life, instead of trying so hard to make what was not meant to be in my life work in some way.

This post really spoke to me. Sometimes you’re gonna love or care for people at different levels and in different ways that are never going to truly care about you. Sometimes, they’re gonna say they do but their actions are actions that speak more loudly to their lack of care and concern than the other way around.

The following re-blogged post was me that day, and every day since in any situation where I feel used or mistreated, and I didn’t even realize it until this moment. I have learned to truly be done without questioning when my heart says it’s time.

It feels good to be done.

Life Bloggs Club

I’m done holding the door open for people and wondering what I’ve done wrong instead of realizing it’s their loss.

I’m done trying to give people a reason to stay when in reality, I shouldn’t want someone who doesn’t want to be here.

I’m done investing time and energy into people who just don’t care.

I’m done picking myself apart for people who only ever took everything I had to give and left once they realized I didn’t have more in me.

I’m done saying sorry to people who should be the one apologizing.

I’m done letting guilt eat away at me when I shouldn’t

I’m done fixating upon my flaws and trying to win people over when there are so many people who wouldn’t like me if I changed.

I’m done pretending to be someone I’m not simply to fit the mold of their expectations. 

I’m done trying so…

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Therapy.

Therapy used to be the bane of my existence. Now that I have the best therapist on the planet (for me) via BetterHelp, it’s not so bad. The whole thing revolves around my time schedule – which can be pretty chaotic – and finally finding (or being gifted by the universe?) a therapist who GETS ME is priceless.

That said, it doesn’t change my thoughts or feelings. It helps me to express them in a safer environment than any other, but the reality is that my kind of depression doesn’t ever really go away. It’s up and down, it doesn’t flip but it rises and falls. And with my mom? It’s basically a pit of hell.

I think the thing that brings me down the most is watching this all play out and not being able to do a damned thing about it. Dementia is like that. No matter what you do, it’s gonna progress. Maybe slowly, maybe quickly. Maybe meds help. They don’t if you’re fighting with the person to even take them.

Mostly, the whole situation makes me both miss AND respect my dad so much more. Sometimes I am so angry that he is gone. Most of the time time I’m just sad. Sad at a level that isn’t just melancholy or blue, but at a level that is a thunderstorm – dark clouds and pouring rain, raging winds and thunder in my head. Sad at a level that I can barely breathe through these days.

But here I am. That counts for something, I suppose. Even still, I feel so useless to everyone around me. I feel useless to my mom because she won’t LET me be useful to her. I feel useless to everyone else because, well, depression. I just stay in my room, and read. I cry but I don’t know why as it doesn’t really let anything out. I wish that someday I would be able to find the words to describe this experience just in case I make it past it and have an opportunity to help someone else.

I hope you all have a pleasant weekend. I appreciate your correspondences and your kindness more than you know. You help me more than you know.

All the love,

C.

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…

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.

More Music | End Transmission

It’s easy for people who don’t have major depression or a chemical depressive disorder to look objectively at a person’s life and point out all of the logical reasons why someone should not feel sad, angry, anxious, or any number of other emotions and emotional experiences that come with depression. But depression isn’t logical. Depression doesn’t care to reason, and certainly not to show mercy.

You can’t talk your way out of it, pray your way out of it, think your way out of it, spiritualize your way out of it… You can’t analyze, theorize, medicate, or meditate your way out of major depressive disorder. You can’t shop, travel, read, or even act your way out of it.

For those people reading this who are in my shoes, you get it. For those in my life who can’t grasp it, I’m sorry. I know that you can’t get it. I’m sorry that I’m sick. I’m sorry that I am not who you want me to be or who I want to be to/for you. For those reading this who don’t get it at all, I hope this helps your mindset.

Please try to remember that it’s a disorder, not a decision. You can’t fake your way through depression every day. You get tired. And when you get tired, and feeling especially tied up in the straightjacket of depression, you really don’t care who sees or doesn’t understand.

Then, you regret that, because they think it’s them. They try to make it about something it’s not, because you should know if you pray or get spiritual or meditate or walk outside or even “JUST TALK” TO THEM!! then you will suddenly be ok! Then, you REALLY hate being here. You REALLY feel misunderstood and unloved. You REALLY want a drink and you REALLY don’t wanna take your meds – because you just want to sleep.

You want to sleep forever. You can’t move. You don’t shower. You don’t even brush your teeth. All you manage to do is go ahead and swallow the pills and go ahead and feed your kid and fake your way through homeschool. So…

The cycle continues. Until one day you say, “f*** the cycle. F*** it. F*** other people. F*** how it looks. AGAIN. I’m going to just make it stop.

And then you don’t. AGAIN. Because of him, in my case. My son. Because you’re too filled with love. That’s right – people with depression still love. They still feel “positive” things. And most often, when they commit suicide, they do so because they love others and they truly believe that the world and their people are better off without them. I know that’s hard to understand. But, it’s the truth.

Why? Why do they think the world would be better off without them? Not because of depression itself. Because they’ve had to fight their depression alone, which is impossible. They believe they are a burden. They feel their depression is causing too many issues for other people.

They feel…. Unloved. Ignored. Unseen. Without worth to add anything good to the world. They don’t want to make the world a darker place because they love. But when they end their lives, and usually while they are still alive and it’s often what pushes them to the end, along with the depression itself, they are labeled with things like selfishness, negativity, cynicism, laziness, etc.

None of those things are true.

You can’t do it alone, and anyone who says they did or do or that you can is a liar. Even if it was influences from media that helped them (music, movies, speakers, writers. etc.), nobody survives depression alone – especially not the kind that wraps itself around you like a second skin and doesn’t let go, and can’t be peeled off, and hurts even to try to put clothes on and cover it for the day.

And that’s the only reason I’m still here.

#welcometomyweek

I haven’t shared any of my music for a while, but, whelp, here’s a thing. Enjoy. All I can do right now is express the music (and the image edits) and that’s what this is. I may not have the words but I have the music. So far, I’ve always had the music.

The basis of this song is to end stigmas, to understand that those with mental illnesses need compassion and they need to be reached out to, not ignored or shunned or pushed away or further labeled, and saying goodbye to those labels.

There is some sort of problem with the video playing on mobile devices so if the video doesn’t work for you, you can listen to the song on SoundCloud as well as download it for free, for listening later.

I hope that YOU are doing well, and I hope that you get something out of this post that helps you better deal with or understand anyone in your life who struggles with depression.

All the love,

C. ❤️

**This song was mixed with Auxy using samples from Fanton ’87’s “Pay Phone.”