I have no idea who I even am anymore…nor, who I wish to be.
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…
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.))
**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 can’t, and that’s ok to know and to accept and to feel and to express. That’s what this post is about. I know I haven’t really updated here and none of you will know what is going on in full but basically my mom has been living with me and… Well…
There comes a point where you have to accept what you can not do and stop letting people keep trying to convince you that you can do in their “motivational” ways. Sure, they’re trying to help.
But when I say I CAN NOT DO THIS BY MYSELF I need people to understand something: i am doing this BY MYSELF and it’s not working – and it’s not about not wanting to. It’s not about not believing in myself. It’s not about the inconvenience. It’s not even about my own mental health (though it should be). It’s about LITERALLY not being able to care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this. And…she’s not really even my mother. Never has been, by blood or otherwise.
It’s about debilitating migraines. It’s about health issues I had long before this ever started.
It’s about I PHYSICALLY am not strong enough to help someone who refuses to help me help them – lifting dead weight every five minutes to go to the bathroom? Nope. Can’t handle it. Especially with a migraine. Getting her in the tub? Impossible. So we improvise with bowls of water and a tub chair OUTSIDE the tub. Getting her to eat? Also impossible. Which doesn’t help with her strength issues. Getting her to get out of the bed and sit up without arguing and telling me how disappointed and ashamed of me my dad would be that I am trying to make her do something she doesn’t want to do – on his birthday yesterday, when she knew how upset I was – because she KNOWS what she’s doing and she just wants to hurt me.
This is not the dementia. This is just her being hateful and stubborn, naturally. Does she even have dementia? No. Not according to the doctors. She checks out fine. So this is just an angry, bitter, mean, frail and weak old woman who needs help with physical things 24/7 and is being verbally and emotionally abusive to the only person who can keep her out of the one place she doesn’t want to go – the nursing home.
Can I even get her in a nursing home? I don’t know. But I’ll tell you this much – I’m going forward with trying because the few people who have even dealt with her for a half hour at her home or dealt with her at church or even the beauty shop over the past few years have straight up told me that she is faking a lot of this and how she acts when I’m not around.
When my helping you hurts me to a point where I am literally sick all the time? I can’t help you anymore. And I will no longer try. This is my honest, heartbreaking statement: if she wants to do it her way, I will take her to the hospital and leave her there and refuse to care for her. They can’t put her on the street. I don’t know what they’ll do with her but it’s not my concern – I have NO binding, legal obligation to be responsible for her. Why? Because she won’t LET me – and maybe that’s been a blessing in disguise.
She’s already getting bedsores because she won’t move and wants to lay in piss diapers and fights me to change her. It absolutely ridiculous.
I don’t care about how it looks if I do take care of her or if I don’t. It’s not about that. I don’t want accolades for doing it, and I don’t give a damn if people think I’m horrible for not being able to do it. But I can’t do it. I can’t care for someone with these needs BY MYSELF, and raise my son and care properly for him. I’m not sorry that that will always come first. I AM legally responsible for him, he’s a minor. And he can’t help me with this.
It’s always going to be a never ending battle I’m never ever going to win. I have finally accepted that.
Now. To take more meds and pray my head quits and I can fucking breathe for five minutes without feeling nauseous and debilitated.
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 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,