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. 🙏❤️

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…

Morning Coffee Thoughts | June 30, 2020

We have to stop shrinking ourselves so that others feel bigger and better than they really are. We have to stop doing things when we don’t want to do them, giving things we don’t want to give, accepting things we don’t want to take, and apologizing for things that are the essence of who we are when who we are has never done anything but love the person we are apologizing to.

Apologies should come from people who have actually done something wrong…and even from those people, apologies and respect shouldn’t have to be begged for. The best apology anyone can offer is not in words but in changing their behavior without us having to remind them what we need every time we turn around – the best apology is them just respecting what we ask without us having to ask it more than one time.

Is there anything you feel I need to apologize to you for? Is there anything I need to or can do for you that I don’t already do? Is there anything you want from me that I don’t realize you want? What can I do to contribute to your happiness, and to life you up, today (or any day)?

These are the questions people who claim to love us should be asking us. These are the questions I’m asking you to ask yourself every morning. These are the questions I am asking you this morning. Answer them with the nitty gritty, real truth. Your truth. Don’t be a version of yourself to placate me or anyone else.

BE AUTHENTICALLY, UNFORGIVINGLY YOU and accept nothing but what you deserve.

Bad Days, Good Days

I have spent a lot of time thinking about this in the last couple of days:  At this time in my life it’s not even about ups or downs or moods…it’s about bad days and good days. People say that you can choose to have a good day just by having a positive thought when you wake up, or by praying or meditating when you wake up – all sorts of different things like that, usually involving gratitude for something, even just life itself. I find that extremely difficult some days, and completely untrue on those days, as witnessed by my past couple of posts.

I don’t think that the power of positive thinking is always enough. There is nothing I can EVER do to change things with my mother. I can not cure dementia. I can not change her. I can not change the situation as it is at this time. Same thing with grief – I can not change the fact that my father and my best friend are dead. They are not coming back. In those instances, people will say it’s down to acceptance and that is true. I can get behind that, to some extent, although as most of you know I don’t believe in such a thing as an end to grief…

I was listening to music earlier while I was folding laundry and this song came on called, “Breathe Me,” by Sia. It hit me in my gut like a bad piece of chicken. We can take responsibility all we want to, we can take action all we want to, but sometimes it just hurts. Sometimes we are just lost. Sometimes we are just hurt. Sometimes we are just afraid. Sometimes we are all of those things and more, all at once, and we are completely overwhelmed. That’s where I’ve been.

Yesterday a friend of mine told me, “Now I’m gonna say this and I just want you to listen to me. I don’t want you to use (anything) as a crutch. You’re STRONG. You walk around with a shaved head because you want to! You don’t care what people think…” She went on… So last night I laid in bed, in my pitch black and freezing cold bedroom trying to stave off an impending migraine (unsuccessful, by the way), and I let all she’d said float around in my head. And ultimately, two things stood out to me.

I do have a crutch. It is alcohol. And it is a waste of time – it doesn’t accomplish anything positive, except momentary lapses in the ability to feel things. And, strength is relative. People see different things as examples of strength. The fact this person, who has been through more than I ever imagined when I first met her, completely rebuilt her life and walks around with such an air of confidence even my shaved head is in awe – for this person to say to me, “you are stronger than this. You ARE STRONG,” humbled me in a way that I couldn’t understand. Of course, that led to more thoughts and more considerations and a whole lot of writing in my journal…but I fell asleep knowing that I did not want to drink today.

And I didn’t.

And I don’t know why. I don’t know what changed.

I do know that by lunch time tomorrow I’ll be craving alcohol like the drought ridden fields crave rain…and I don’t know what I’ll do about that. Probably text or call her, or my cousin, or my therapist…maybe go to the feed store and hang out. I don’t know. But I do know this much – if you really want to make a change, you will do it.

I haven’t smoked in over 24 hours, haven’t had a drink in over 24 hours, and the only reason is because I just wanted to see if I could. I didn’t tell anyone until later in the day today, when I was at the feed store. I didn’t keep it to myself because I was afraid I would fail. I kept it to myself because I only wanted it to be about me and what I wanted.

I don’t know what tomorrow will bring. But I do know that I don’t feel the same way I felt a few days ago when I was battling the suicidal ideation and the complete lack of regard for my life, my health, or my Be-ing. I don’t know what changed… I think mostly, it was being seen, and being cared for, and being spoken to in a way that wasn’t at all what I expected.

I always said I would never allow another “Dorie” into my life – or at least that there would never be another her. I think I may have changed my mind…or my heart… You never know who is going to walk into your life, or when.

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.

F*** It.

Today someone asked me a whole lot of questions about different things. The one that stuck out the most for me was about how I felt about dealing with the situation with my mother, and if I felt like a bad daughter. It didn’t take more than a nano second for me to yell, “HELL NO I don’t feel like I’m being a bad daughter – I think what’s going on is that I’m sick and tired of being treated like one.”

It’s triggering many things, from depression and hurt in general, to bad dreams and weird memories from my childhood… Not that life isn’t difficult for all of us at some point in time, and all the time for some people, but that’s the thing I’m feeling the most. It’s just all so difficult. I told my mother’s doctor just last week I no longer wanted to be her guardian (something I’ve been fighting to be named as for over a year) and that I was willing to lose the land and even my horses at this point if it meant that she was cared for. I feel like I just can’t deal with it anymore.

As far as drinking – I shared a while back that I was concerned about how much I was drinking. Truth be told I’ve been using alcohol as a sort of escape for a long time, just not to this level. I had quit for a while but I just picked it right back up because, well, in the simplest of terms, fuck it. I know it’s not the answer and I know it’s not healthy (at a number of levels) but right now I really just don’t care.

I really don’t care about anything right now… I feel very much like I could hide away and stay gone for a very long time and be perfectly OK with that. I really can’t even find my words today – which is also unusual.

I’m angry. I’m depressed. I’m not well. And honestly, I don’t care. I’m ok with not being ok. And right now I’m ok with drinking myself to death. I don’t care if that sounds selfish to some, or if it’s something others can’t understand. Raw me here. I don’t want to walk in these shoes anymore. I don’t really want to walk at all. And I’m not even writing this under the influence of alcohol. I’m also not writing it for attention. I write. That’s it.

Feeling Old

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.