Thursday Thoughts: Alzheimer’s, Death and a Whine

10487283_10203395028384143_5237883498684633183_nMy mum had Alzheimer’s for many years. She was diagnosed on December 10th, 2011, but it had shown its ugly face earlier and was obvious by June of 2010. Which is when my Dad died. My stepfather died in 2014. It’s been a rough few years.

And I don’t know how I got onto that. Huh. Guess that’s part of the whine?

At any rate, I had to finally give up on her walking in July of last year. It wasn’t for lack of strength. She had that. It was because the disease, after eating away so much of her brain, had finally reached the part that could instruct her legs to move. It would take 5 minutes of “Mom, just move this leg forward. Yup. Lift it. Just move it forward” and her saying “Okay. Like this?” and trying but failing before I could get her to move that leg. Because of this, I had to try using a wheelchair to get her to an appointment. That didn’t work either. I almost dropped her twice. By the end of July I was no longer taking her to appointments and she was wheelchair bound.

In a long line of losses, the loss of her mobility was the hardest for her emotionally. I, to this day (to this minute as I fight back tears) feel guilty for giving up on her. It was the right thing to do. I know that intellectually. But I want that back. I want to have her walking again and talking. In my heart, I still struggle with whether or not that decision led to her death.

That last phase started the Thursday before Mother’s day. She had bruises on her hands–from what I don’t know–that became swelling in first one arm, then the other. She was hospitalized, where they lanced her arms to let the fluid out. And then told me, on Mother’s day, that she was bleeding internally somewhere. That trying to find it meant trying to fix it, and fixing it meant putting her under. My mother’s brain, at that point, was barely functioning. I was down to “thank you” from her, and hand holding. She couldn’t afford to lose any more brain cells, which would have happened under anesthesia, if she would even have made it through surgery. She had written up legal documents that requested no blood products, antibiotics, surgeries etc be used when she became unable to interact. Since losing any more cognition (which would happen from surgery) would put her in that place, I had to agree with the doc to do nothing. The fact that I’m writing this out, that I’ve gone through it several times with different people, tells you how difficult that decision was. I know it was right. But it’s a struggle to agree to ending your mother’s life.

So we put her on hospice and thought maybe we had a few months. I mean, other than the bleeding into her arms (the swelling kept coming back–she wasn’t clotting) she seemed pretty physically healthy. At least that’s what I saw. But a week into her hospice care she was back in the hospital, and this time when they released her they sent her to a short-term hospice facility. She had, the hospital said, lost more blood and was definitely bleeding internally somewhere from something. A doctor told me that she didn’t think Mom had more than a couple weeks. I was tired. I didn’t believe her. Not really.

I’m still tired.

It was less than a week before she passed. And then I was blanketed in grief and exhausted from 3 weeks of extroversion. Every day, people and not fun people. People telling me my mother is dying people. After that it was planning a service. My siblings and I don’t talk. I won’t even text with one of them. So the planning was, again, exhausting, as was the service. People, people, some painful drama, and a lot of resentment.

By the time it was over I’d extroverted through 4 weeks. Since then, since June 5th, I’ve been trying to recover. To just breathe again. To want to see people at all. I haven’t given a lot of thought to writing and I certainly haven’t written. I’d planned so much. And I should do it. But I feel guilty over the free time I have after my mom passed, and I’m guilty that I didn’t stop it, and I’d be guilty if I tried. So the time I haven’t spent cleaning up my mother’s things, I’ve spent on facebook. I’ve read a little, too, but even that makes me feel guilty. I should be writing. I should aways be writing. I should always be taking care of my mother. Should is a new swear in my life.

Just writing this creates a huge wave of grief. It sits in my throat. I guess most people feel it in their heart, but it’s in my throat. I think from holding back sobs. I miss my Mom. In the end, we didn’t have much left, my mother and me, but we did have hand-holding. We did have listening to music in her facility. We did have me reading to her (Wizard of Oz, Harry Potter because I could get pictures for her of the characters and places.) We did have an occasional smile. I miss that.

So–deep breath–it’s another week without writing. It’s another week of trying to care about writing and failing. But I can’t stay “here” stuck in my grief and introverted exhaustion forever. It’s not a good place. So right now, before I call this post done, I am calling up a file. . .and I paged down to where I left off. I have some minor changes to make in Children of Liberty. And a few minor ones to make in The Liars as well, for purposes of consistency. Such are the issues with world-building. Somewhere there’s a notebook with those changes written out. But I’m not going looking for it today. Today, I opened a file. I have critiquing to do but in between I will look at that file and maybe find places to tweak. It’s the best I can do today.

Thursday Thoughts

Once again, no blogging really this week. Should’ve done it yesterday. My mother came out of the hospital just to be sent back to the ER today.

Alzheimer’s is horrible. So much more horrible than you ever see on television or in movies.

Thursday Thoughts on Friday

facebook-thankful-reactionOkay. This is just going to be a lot of rambling.

The new grateful reaction on facebook is the my favoritest thing since they took away the bulletin boards and buttons. I’m using it for everything. I’m really not all that grateful. I just like the flower.

Last night’s Big Bang episode surprised me, big time. But it didn’t shock me, which is the sign of great writing to me, when something happens that you didn’t see coming, but isn’t so out-there that it’s unrealistic.

Baby Groot makes me happier than puppies. Seriously. Also there’s a facebook page for Baby Groot. I loved Guardians 2 and baby groot was the best part of it. Not nearly enough of Chris Pratt dancing though.

I always knew that the Trump presidency was going to be this bad. I always knew it was going to be non-stop bone-jarring drama. But I never foresaw the President of the United States threatening the FBI director he fired–a man who was investigating said President–via twitter. There are too many words too describe just how terrible this is.

The city next door to us is in the middle of a man-hunt for a dangerous guy with a gun who shot and killed his girlfriend. I am not sure what I’m supposed to do with that information.

I got flowers for Mum’s day from one of my sons. The card says Happy Mother’s day, Mom but there’s no name. Now I have to text them and hope I don’t accidentally “shame” the one who did not send me flowers.

It’s going to rain here all day Sunday. For an introverted mother, that’s kind of a mother’s day gift. I think I’ll create a menu for myself.

And that’s all I got. Hopefully next week will be calmer and my brain will work better.

Thursday Thoughts, Trigger Warnings In Books

My coffee does not look anywhere near this good. I’d have to leave the house for that. It’s cold and grey here in New England and I am doing everything I can not to lpexels-photo-67514eave the house. There’s precious little food in the fridge, though and I’m currently wondering if my husband would be happy with ramen pride “casserole” with canned chicken. Probably not.

Also, I continue to be flummoxed by how wordpress decides to put pictures in its posting area. Also, I love the word flummoxed. I’m going to use it a few times today.

So, trigger warnings. This started in a facebook group as it seems a lot of my posts do these days. And that’s a grammatically terrible sentence, but whatever. It’s dreary today. Anyway, somebody said that he thought trigger warnings were ridiculous and people shouldn’t do them. Naturally, about 150 million other people jumped on to complain (it was really more like 10) about his complaint. Then, naturally, another 150 million people (probably more like 10) came back to defend his complaint often in pretty ugly ways. It  went downhill from there. If you have never seen these kind of things on facebook, good for you. You have good friends and have found that secret, loving spot of the internet that many of us are looking for.

Anyway, I had never even heard of trigger warnings in books so I was flummoxed by the whole thing, but mostly by the anger and vitriol. (See how I fit today’s favorite word in there? Man, I wish I had not found that coffee picture. Mine is pretty boring in comparison.) I was immediately resistant to the idea as I am about anything that says I have to do more work. But then I went to bed and thought about it for awhile. I came up with 3 points.

  1. Trigger warnings are a nicety, a courtesy, from a writer to a reader that lets them know the writer is concerned with readers’ well-being. Done well, it doesn’t give away the story, nobody is harmed and it doesn’t take up a whole lot of space. In that respect, doing it isn’t that big a deal (or a whole lot of work).
  2. Trigger warnings are another way to stop the wrong people from reading your book and then giving it a terrible review. If you warn them and somebody does give it a bad review, then it’s on them. Pretty sure anybody who reads the review will dismiss it at that point.
  3. Some people like gritty stories. A trigger warning might actually intrigue more readers than it loses. And frankly, I am not going to go any further down that road because it looks kind of icky.

Finally, not a point I made on that page (I can’t find the post anymore. It might have been taken down) but why not try to spare somebody suffering from PTSD the pain? There was a whole lot of anger over the idea of doing this, and for the life of me I can’t understand why. If you don’t want to put the warning in your book, then don’t. Why are you (not you personally but you as in the angry people) so enraged by people who want to spare other people discomfort or downright disabling thoughts and recollections? It doesn’t make sense to me, but a lot things don’t make sense to me, which is part of the reason I’m a writer. I’m trying to make sense of the world I live in. So far, it’s a bust.

Here are some basic thoughts on the subject: you don’t need to put trigger warnings on books that the reader should know, just by being a person in the 21st century, are going to contain some nasty stuff. Horror books, war books, serial killer thrillers and probably some gritty cop stories. Trigger warnings in other genres, like murder mysteries, apocalyptic and dystopian genres, like what I write, may or may not be useful. Some readers may assume that violence could happen. Others may not, so it can go either way.

On the other hand, genres that a reader expects to be “safe”–cozy mysteries, most romances, and probably young adult–could really use a warning if you’re throwing something rough in there. One of my historical romances has a kind of nasty rape scene at the end (the heroine has a flashback and her memories are horrifyingly graphic). I feel it’s needed in the story for the reader to truly understand her motives, but I’ve always been a little uneasy about it. I do not want to traumatize readers. Make them (you) uncomfortable now and again? Yeah, if it makes you think. If it helps bring about a conversation in your head about society or the people in your life or whatever. Sometimes the greatest clarity we have starts with uncomfortable thoughts or emotions. But I don’t want readers curled up in ball, unable to move because they are reliving some terrible part of their lives. I don’t want to be the reason for a 2 am phone call to a therapist or a trip to the ER. So that book will get a warning.

While writing The PostPlague Trilogy I have considered friends of mine who have been victims of domestic abuse. I have thought about people who have escaped really terrible regimes in other countries (or maybe non-regimes like ISIS) and how they would react to brutality of the world I created. I suspect some people would find Neri’s fight and her wins to be the comforting. Good conquers Evil stuff, yes you can win in your life too! But not everybody will feel that way and I would never, ever want to hurt a friend. I don’t want to hurt people who would be my friends if I met them either.

Each author has to make this decision themselves. Each author should weigh the pros and cons of losing readers who might have liked their books, violence and all, if they hadn’t been warned, compared to finding readers who re-live past horrors because of the book and end up hating the author for life. This is not a simple “left or right” decision. It’s part humanitarian and part marketing.

For me, I feel like The PostPlague Trilogy is by default violent. It’s pretty clear from the blurb that this is a brutal society and there will be some terrible stuff in the book. But readers still may not actually realize that. So I will, because of that, put a short warning in my books. Just as soon as I get off the sofa, get dressed and get out to the local coffee shop for that coffee up there in the post picture.