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…

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…

She’s Elderly, and Senile, and Hurtful, But…

Session tonight was…emotional. It was one of those tearful, snotty, sobbing sessions – one of those ones that I go into wishing I could slide down a razor blade into a bucket of alcohol instead because that would hurt less, but at the end of it am left calmer and numb and call my mother back on the phone and say, “hey, I love you. Despite all you do to make me hate you, I love you, and that’s why I have done the things I have done.”

I’m trying very hard to accept and continue to be myself, and appropriately deal with my mother, even while many people in my life are dumping their opinions and unwanted advice on me like seven dust on a yard full of fleas.

I believe that…

No one has the right to tell you how long your grieving should last or how fast or when you need to move on, not even your own mind. Follow your heart.

No one has the right to judge or hurt or ignore you – especially when they call you “friend.” Don’t believe them when they call themselves your friend. Friends don’t do those things – not on purpose.

No one has the right to tell you how to live your life or how to be who you are. Don’t listen to them. Don’t try to manage or live your life based on other people’s double standards.

No one has the right to make you cry. Don’t believe anyone who tells you that your tears are your own fault.

Just because you’re not dealing with things the way someone else is dealing with things is irrelevant – they’re not living YOUR life or YOUR situation or walking in YOUR shoes.

That said, sometimes we care about other people so much – the people who do these things to us – that we continue to try. We continue to take responsibility for them when we know or believe we have a responsibility to keep them safe – especially when they’re mentally ill or senile or sick…

Because while I DO believe in taking responsibility for our lives and in taking care of ourselves, I also believe in taking care of others – even those who have hurt us – when they need to be taken care of – especially when they are mentally ill.

If my husband, for example, had given up on me because of my depression and actions and words (or lack thereof) – and Lord knows how many bad episodes there have been throughout our relationship – if he’d walked away to take care of himself or because he decided not to “allow” it anymore, I’d be dead by now. I’d be dead two or three times over. And that’s the truth. But this post isn’t about my depression. It’s about my mother.

Whoever reads this gets to have their own opinion. That’s fine. But don’t comment to me about how no one has the power to make a person do or feel anything unless the person hurting allows it because that’s bullshit. That’s what my therapist and I have been talking about in session tonight – how that’s all I’ve been hearing for three days now from different people around me regarding my mother, and I’m sick of it.

People’s words – or even lack of them – can HURT. People DO cause tears and pain and it has nothing to do with what someone is allowing to “control” their emotions. That’s a copout and it’s blaming the person feeling the pain for feeling pain that they didn’t bring onto themselves.

Sometimes a person can’t “walk away.” Sometimes there is no choice but to allow it to continue to some extent, or even fully. Sometimes there is no other option but to bide your time and wait for your moment to “escape.”

So for those people who keep saying things to me like, “why do you “allow” it to continue this way,” or telling me how I am only responsible for myself, I have a question (or two or ten):

How many times did YOU choose to allow someone to continue hurting you (in ANY way) because you loved them, or because you FELT you had a responsibility to take care of them (whether you actually did or didn’t)?

How long did it take YOU to start blaming yourself instead of someone else for how they “made” you feel? I’m sure you probably ALWAYS blamed yourself for the actions or behaviors of others, right? I’m sure you NEVER, ever were hurt by their words or actions and only blamed yourself for “allowing” it. Pfft.

And then, how long did it take you to STOP blaming someone else? Or do you still say things like, “he is/was such an asshole,” or, “she is/was such a control freak,” or, “they were/are so ridiculous?”

You know what? He/she may have been or may still be those things. That’s the role some people play in the world. And they’re hurtful and they ARE to blame for the pain they cause. And you may not always be to blame for “allowing it to continue.” Every situation is different. Don’t judge mine.

From my therapist:

“Maybe a person’s situation doesn’t allow them to fully escape the person hurting them. Maybe a person judging, or telling you how to live your life and deal with your situations, even when you agree with a lot of their advice and wish that it COULD work for you, just doesn’t get it. Maybe they don’t or can’t grasp the full scope of your situation.

Or maybe, just maybe, other people just don’t have the heart or the character you have – not everyone is strong enough to endure mental illness or abuse and still love the person or care for the person who has or does hurt them (emotionally in this case), and not want them to hurt themselves, and want to protect them from dying or care for them while they are dying despite the pain they themselves might be feeling, or want to try to help them to help themselves.”

And so this all sums up where I currently am on the situation with my mother. Her idle threats don’t scare me. State laws don’t scare me (at this point). But I DO have a responsibility to take care of a woman who has no one but me and is literally going senile.

Not eating or taking care of herself.

Becoming a danger to herself and others.

Even if that care exists only in bringing in outside help and even if it means having to sometimes be exposed to her narcissistic and emotional abuse, I DO have and carry that responsibility.

She’s not my mother, but she used to be.
Sometimes she was.

Until session tonight I’d forgotten that sometimes she was normal.

Sometimes she helped me with school projects all night until they were finished (even if only because she wanted me to get an A for her).

Sometimes she cooked meals instead of delegating that task to my father despite his working, too.

Part of her controlling behavior was keeping the house spotless and sanitary and that’s was, in some ways, good for me and my health and well being.

Sometimes she made me clothes, with her own hands, because they couldn’t afford to shop for them.

Sometimes she hugged me, and meant it, even if I never remember her ever telling me she was proud of me unless it was in front of someone else.

There were others, but I’m finally sleepy now and will save them for later…

Tonight, my therapist cracked open a whole new set of memories from my childhood with my mother that I had blocked in the process of trying to block the bad ones. And tonight she made it a point, in “forcing” me to share some of those better memories, to remind me that despite my mothers illnesses, she is human – just like despite my illnesses I am human. That’s the thing I have kept trying to get people to understand about my heart and why I struggle so with the whole situation since my Dad died.

There’s a song by Rascal Flatts called, “What Hurts the Most,” that comes to mind and while it is actually meant to be about a romantic relationship, it reminds me very much of my relationship with my mother throughout my life. There are these moments – or have been – of being so close…and what hurts the most is not knowing how it could have been to have had her as my mother consistently when every now and then there would be a little taste of her being kind, being motherly, not hurting me…and those are the parts my heart still carries that keep me in this place of caring…

Don’t. Judge. A. Heart. You. Don’t. Know.

Don’t. Judge. A. Life. You. Don’t. Know.

Don’t. Judge. A. Life. You’re. Not. Living.

Do What You Can

Start where you are. Use what you have. Do what you can. -Arthur Ashe 

That’s all I can do, at this point. 

Today I walked my mom to her mailbox with my grandmother’s walking cane. It was iffy. I was terrified. It was very strange to feel the same “fear” for her safety as I often feel for my son’s when I’m the “responsible adult in the room.” It’s very disorienting to have such a very clear role reversal. It’s been semi- like this for a while now, but at this point we have crossed that line very definitely. It’s no longer a sort of blurry line or a dotted line. It’s a very solid line and we have very realistically crossed it. 

Tomorrow I have a meeting with the home health nurse about getting PT out a couple of times a week and having a social worker assigned to the case to help me to make sure I have access to all the resources I need. My mother is gone. As tumultuous as our relationship has always been, I’m still really sad inside, which was unexpected. I don’t know who this woman is. Neither does she. 

I saw a side to my mom when my dad died that I’d never seen – I saw an independent, capable woman emerge, brave and strong and extremely adept. Within months I saw that woman begin to fade away. In the last year I have witnessed (and fought against) the slow decline that has led to this sudden, extreme decline we have been facing over the last month. And the only thing I can say with truth and with compassion is that for her sake, not my own, I hope that dementia is a swift journey for her, like cancer was for Dorie. Because even when you have very little of a good past with a person, this is a very difficult thing to witness. 

It is hard with Granny Dot. With my mom…it’s beyond that. Maybe it’s because it’s not just compassion, but the nitty gritty caregiving I am responsible for with her. I don’t know. I never really liked my mother (because she wasn’t and never has been “my mother,” though I suppose I’ve always loved her, if that makes sense) until now – and it’s because now I’m seeing the mother I always hoped she would become…and I’m seeing that mother, in me… 

C.