Gina Harris's Blog, page 76
August 28, 2019
Choosing to engage
I hadn't planned on bringing up the Nazi-leaning doting grandmother in this post, but I kept remembering her, and I guess it does relate.
In this case, I did not choose to unfriend her. I replied to one post of hers, and without another word she unfriended me and all of my relatives, include the conservative one who would probably agree with her.
In this case, when I got the friend request I suspected she would be terrible, but I love a lot of her extended family, so I tried it, and she immediately started replying to my posts with defenses of Trump. I did contradict her, continuously but respectfully. Then I saw a post of hers.
It did not exactly praise Trump - it admitted he was gross in a lot of ways - but it drew an analogy that if you are infested you want the guy who will get rid of the infestation, regardless of his personal qualities. It had a lot of stupidity and racism in it, but also, when your analogies are about vermin and extermination, that is Nazi talk, and that's what I told her, actually pretty gently.
Her reaction probably indicates that it didn't help, but if I stand by it because if I am becoming an accidental Nazi, I want to know! If you see me leaning toward fascism or eugenics, you tell me!
And I have in the past gotten warnings about my growing liberalism, and that's cool. I know, actually, but if you are concerned we can talk about that respectfully. Maybe you will still disagree with me, but you will feel better about my motivations or my thought processes. That can be caring.
But then, if you do warn kindly, and they continue to appall you, maybe you need to disconnect.
With the guy I blocked, it was partly to prevent me from being tempted to try again. I had answers for everything he said, but giving them wasn't doing anything.
It was also largely to shoo away his followers with their false equivalencies and drug references.
Ultimately, that is once again a way of avoiding stress, but one where I still have concerns. If I never saw the thoughts of someone who disagreed with me, that would take away a lot of stress. It would also give me a false picture of the world. It would make it very easy for me to start believing very twisted things without having any push back. That would not be good.
The issue I feel emotionally is that I have a strong tendency toward loving other people, and am pretty good about liking people in general. I feel bad when that doesn't work out.
The issue I worry about intellectually is that echo chambers are dangerous. If I cut off all of the people I think are wrong, it increases my isolation and reinforces theirs.
These are not good things.
Keeping contact is not necessarily good either. In the past few years there have been more times when I have paused before retweeting someone or saying things about where I live in the fear that it would expose someone vulnerable to abuse. In addition, seeing people who should know better saying really messed up things makes it really easy for me to just start hating life - mine and everybody else's - and that isn't good.
I don't have any easy answers, but I think it is important to make conscious choices about what we do and how we do it.
I remember a few years ago several school friends getting onto Facebook for the first time, being overwhelmed by all the requests, and backing off. They would often come back, but it was easy to be overwhelmed and not easy to know how to handle it. I often gave advice, and as much as it frequently focused on uses of blocking and muting, it was really more about choosing: what do you want from Facebook? Here are some options.
Personally, I can be a stressful person to follow. I post a lot of news about racism, sexism, and corruption. I think it's important, but I also know it can make me a downer. It can also make you better-informed, but that can be stressful. As strongly as I believe that we have responsibilities to each other, we also each have a responsibility to self.
I read once that the most informed people were those who watched Sunday morning news shows. My news intake correlated to the second-best informed group of people. I tried moving groups, but I found that watching certain politicians lie made my blood boil worse than reading about it. The extra edge in information was not worth the anger. (I get plenty angry as is.)
To helps us think on the topic, I just saw this today: https://www.sciencedaily.com/releases/2019/08/190827125559.htm
I find the emphasis odd on how the stress of the addiction causes the person to become more addicted, because I thought that was pretty normal, but yes, because social media has different ways of being engaged (chatting, scanning, posting), you can move on to a different part of it when perhaps you would be better off doing something else entirely.
All of which is to say, decide what works for you. There is a "hit" that comes with being on, but is it a good hit? Do you need to call friends instead of seeing them online? Do you need to mute people? Did you know Facebook will allow you to take a 30-day break from someone if you are not sure if you would be better off without them? There are a lot of options.
We can find the best match for us, but we will not automatically stumble onto that. Going by what's automatic means we will follow the algorithms that encourage the activity the social media companies have decided is best for them. You are worth more than that.
Related posts:
https://preparedspork.blogspot.com/2018/10/using-social-media.html
In this case, I did not choose to unfriend her. I replied to one post of hers, and without another word she unfriended me and all of my relatives, include the conservative one who would probably agree with her.
In this case, when I got the friend request I suspected she would be terrible, but I love a lot of her extended family, so I tried it, and she immediately started replying to my posts with defenses of Trump. I did contradict her, continuously but respectfully. Then I saw a post of hers.
It did not exactly praise Trump - it admitted he was gross in a lot of ways - but it drew an analogy that if you are infested you want the guy who will get rid of the infestation, regardless of his personal qualities. It had a lot of stupidity and racism in it, but also, when your analogies are about vermin and extermination, that is Nazi talk, and that's what I told her, actually pretty gently.
Her reaction probably indicates that it didn't help, but if I stand by it because if I am becoming an accidental Nazi, I want to know! If you see me leaning toward fascism or eugenics, you tell me!
And I have in the past gotten warnings about my growing liberalism, and that's cool. I know, actually, but if you are concerned we can talk about that respectfully. Maybe you will still disagree with me, but you will feel better about my motivations or my thought processes. That can be caring.
But then, if you do warn kindly, and they continue to appall you, maybe you need to disconnect.
With the guy I blocked, it was partly to prevent me from being tempted to try again. I had answers for everything he said, but giving them wasn't doing anything.
It was also largely to shoo away his followers with their false equivalencies and drug references.
Ultimately, that is once again a way of avoiding stress, but one where I still have concerns. If I never saw the thoughts of someone who disagreed with me, that would take away a lot of stress. It would also give me a false picture of the world. It would make it very easy for me to start believing very twisted things without having any push back. That would not be good.
The issue I feel emotionally is that I have a strong tendency toward loving other people, and am pretty good about liking people in general. I feel bad when that doesn't work out.
The issue I worry about intellectually is that echo chambers are dangerous. If I cut off all of the people I think are wrong, it increases my isolation and reinforces theirs.
These are not good things.
Keeping contact is not necessarily good either. In the past few years there have been more times when I have paused before retweeting someone or saying things about where I live in the fear that it would expose someone vulnerable to abuse. In addition, seeing people who should know better saying really messed up things makes it really easy for me to just start hating life - mine and everybody else's - and that isn't good.
I don't have any easy answers, but I think it is important to make conscious choices about what we do and how we do it.
I remember a few years ago several school friends getting onto Facebook for the first time, being overwhelmed by all the requests, and backing off. They would often come back, but it was easy to be overwhelmed and not easy to know how to handle it. I often gave advice, and as much as it frequently focused on uses of blocking and muting, it was really more about choosing: what do you want from Facebook? Here are some options.
Personally, I can be a stressful person to follow. I post a lot of news about racism, sexism, and corruption. I think it's important, but I also know it can make me a downer. It can also make you better-informed, but that can be stressful. As strongly as I believe that we have responsibilities to each other, we also each have a responsibility to self.
I read once that the most informed people were those who watched Sunday morning news shows. My news intake correlated to the second-best informed group of people. I tried moving groups, but I found that watching certain politicians lie made my blood boil worse than reading about it. The extra edge in information was not worth the anger. (I get plenty angry as is.)
To helps us think on the topic, I just saw this today: https://www.sciencedaily.com/releases/2019/08/190827125559.htm
I find the emphasis odd on how the stress of the addiction causes the person to become more addicted, because I thought that was pretty normal, but yes, because social media has different ways of being engaged (chatting, scanning, posting), you can move on to a different part of it when perhaps you would be better off doing something else entirely.
All of which is to say, decide what works for you. There is a "hit" that comes with being on, but is it a good hit? Do you need to call friends instead of seeing them online? Do you need to mute people? Did you know Facebook will allow you to take a 30-day break from someone if you are not sure if you would be better off without them? There are a lot of options.
We can find the best match for us, but we will not automatically stumble onto that. Going by what's automatic means we will follow the algorithms that encourage the activity the social media companies have decided is best for them. You are worth more than that.
Related posts:
https://preparedspork.blogspot.com/2018/10/using-social-media.html
August 27, 2019
Deleting people
Picking up where we left off, even though I am trying to focus on staying connected to people, I ended two connections last week. I unfriended one person and I blocked another.
I don't take that lightly. I know people who go on unfollow/unfriend sprees, and I have never felt a need for that. However, if their reason for doing so is that they have realized that too many updates from people they don't care about makes them miss updates from the people that they do care about, that would make a lot of sense, except that I am not comfortable blithely deciding that I don't care about a bunch of people.
Looking back, I think something helped with the one unfriend that I didn't realize at first.
The engagement started with a status update she had about needing to round up all of the mentally ill and drug addicts and get them off the streets.
I initially assumed it was related to Trump's recent interest in locking up mentally ill people as a way of ending mass shootings. Even if that were not blatantly cruel, it wouldn't work for that problem; most of the shooters aren't mentally ill.
She said it had nothing to do with Trump, so that was probably just a big coincidence. Maybe her real concern was ending homelessness, but not by fixing economic inequality or housing shortages.
There are reasons it is not an effective plan for that either, but the blatant cruelty was what really bothered me. I mean, someone who thinks that rounding up all mentally ill and addicted people will get them treated and happier and healthier, they are wrong, but at least their heart is in a decent place. I could not feel that way about this poster, especially seeing how she was responding to someone who uses weed for PTSD.
I supported his replies, but we didn't really get anywhere. Here's the funny part; that guy was one of the two people who was really abusive to me about Bernie Sanders, and unfriended me then. Obviously he had only unfriended me and not blocked me.
That's all fine; we were not particularly close and I didn't really have hard feelings over it. I was more concerned that the person I regularly socialized with was so readily abusive to me. I did end up unfriending her not long after the second time she tore into me, and later I ended up being really glad that I had already done so. That was the thing that helped.
In that case, this one friend was an anti-vaxxer. She would not use that term; she just doesn't believe that parents should have to abide by the science-backed school schedule or have to get all of the vaccines. Also it is not about autism or mercury or any of the other well-debunked things. It was discussions about vaccines that made me less surprised when she raged at me about Sanders. There had been some other indications of judginess, hypocrisy, and self-absorption, but that was the big one.
Anyway, back when new measles cases were being discovered every day, I wondered if she had changed her stance at all. Instead she had added a profile sticker about vaccine choice.
I felt so much more relaxed not being her friend.
That didn't make her philosophy less damaging to the community. Us no longer being friends did not reduce her capacity for harm to others, but it did eliminate the amount of stress that she caused me. I don't need any more stress.
So this other person wanting to lock up people... that is a harmful attitude. It was not the first time she had posted something like that. I bet she is anti-immigrant too. However, based on how that conversation went, I am not going to influence her. She is also not going to influence me. We could potentially really annoy each other, but does that help anyone?
In this case it was easy for me to decide to unfriend her because we were not really friends. We went to the same high school, but when I first saw the friend request I initially thought she was from my mission because I don't remember her at all.
That doesn't have to be a deal-breaker; there are people I don't remember or barely remember from then that I really like now. I don't remember her, and I am not finding her likable, and that made it almost easy to decide to say goodbye. Almost.
There was less indifference with the person I blocked, so that will be another story, and another look at consciously and ethically curating your social media interactions.
I don't take that lightly. I know people who go on unfollow/unfriend sprees, and I have never felt a need for that. However, if their reason for doing so is that they have realized that too many updates from people they don't care about makes them miss updates from the people that they do care about, that would make a lot of sense, except that I am not comfortable blithely deciding that I don't care about a bunch of people.
Looking back, I think something helped with the one unfriend that I didn't realize at first.
The engagement started with a status update she had about needing to round up all of the mentally ill and drug addicts and get them off the streets.
I initially assumed it was related to Trump's recent interest in locking up mentally ill people as a way of ending mass shootings. Even if that were not blatantly cruel, it wouldn't work for that problem; most of the shooters aren't mentally ill.
She said it had nothing to do with Trump, so that was probably just a big coincidence. Maybe her real concern was ending homelessness, but not by fixing economic inequality or housing shortages.
There are reasons it is not an effective plan for that either, but the blatant cruelty was what really bothered me. I mean, someone who thinks that rounding up all mentally ill and addicted people will get them treated and happier and healthier, they are wrong, but at least their heart is in a decent place. I could not feel that way about this poster, especially seeing how she was responding to someone who uses weed for PTSD.
I supported his replies, but we didn't really get anywhere. Here's the funny part; that guy was one of the two people who was really abusive to me about Bernie Sanders, and unfriended me then. Obviously he had only unfriended me and not blocked me.
That's all fine; we were not particularly close and I didn't really have hard feelings over it. I was more concerned that the person I regularly socialized with was so readily abusive to me. I did end up unfriending her not long after the second time she tore into me, and later I ended up being really glad that I had already done so. That was the thing that helped.
In that case, this one friend was an anti-vaxxer. She would not use that term; she just doesn't believe that parents should have to abide by the science-backed school schedule or have to get all of the vaccines. Also it is not about autism or mercury or any of the other well-debunked things. It was discussions about vaccines that made me less surprised when she raged at me about Sanders. There had been some other indications of judginess, hypocrisy, and self-absorption, but that was the big one.
Anyway, back when new measles cases were being discovered every day, I wondered if she had changed her stance at all. Instead she had added a profile sticker about vaccine choice.
I felt so much more relaxed not being her friend.
That didn't make her philosophy less damaging to the community. Us no longer being friends did not reduce her capacity for harm to others, but it did eliminate the amount of stress that she caused me. I don't need any more stress.
So this other person wanting to lock up people... that is a harmful attitude. It was not the first time she had posted something like that. I bet she is anti-immigrant too. However, based on how that conversation went, I am not going to influence her. She is also not going to influence me. We could potentially really annoy each other, but does that help anyone?
In this case it was easy for me to decide to unfriend her because we were not really friends. We went to the same high school, but when I first saw the friend request I initially thought she was from my mission because I don't remember her at all.
That doesn't have to be a deal-breaker; there are people I don't remember or barely remember from then that I really like now. I don't remember her, and I am not finding her likable, and that made it almost easy to decide to say goodbye. Almost.
There was less indifference with the person I blocked, so that will be another story, and another look at consciously and ethically curating your social media interactions.
August 26, 2019
Modifying social media
You know how every change to Facebook has made it worse? That recently happened with Twitter.
I guess I should specify what I mean by "worse". Obviously the platforms have their own opinion.
I use social media to keep track of people I care about and am interested in. My favorite defunct Facebook feature was a Friends feed where I could scroll down and see the most recent post from every friend. That was great. It's been gone for years.
The change on Twitter seemed like an ordinary feed adjustment, but it limits how many tweets you see and makes scrolling much more difficult, where you are likely to lose what you want to see. Also, most of what you do see is promoted ads, because those are much bigger and they take up most of the screen.
In addition, Twitter has started putting tweets in my feed from people followed by people I follow. Retweets are one thing, and I was irritated when I saw tweets there that had merely been liked by people I follow, but just because a few people I follow follow this person you think I care about their tweets that my tweeps have not even engaged with? I do not.
I do care that it does not load new tweets at the same rate, seriously diluting it's real-time flow. I get that adding tweets I did not ask for is a way of trying to get me to engage more, but ironically it means that I see the content that I want to see less.
I get that the platform providers want to make money, and ads are a way of doing that. Despite all the panicked rumors of Facebook starting to charge, that has never happened, and it wouldn't even make sense for it to happen. They make too much money already from selling ads and providing data. Sure, greed means they will always want more, but they would lose more in their ability to sell us than they would gain from charging us.
This is a separate question from whether I want to support the various social media companies at all. I have concerns about it, but I don't have any good alternatives so I continue to use them even knowing that these are not good people and that they tend to support more white supremacy and misogyny and harassment not as a bug, but as a feature.
No, this is about - since I remain - how do I make it serve my purposes?
Some of that is personal adjustment. I try and make more of a point of noticing who posted the things that interest me. That way if I lose them on the scroll I can find my way back to them. I also try and pay attention to whom I am seeing and who has been missing. Individual look-ups may be the key.
I am also thinking about checking Instagram more regularly. The first time I tried it, I did see things from people I don't normally see posts from. The second time I checked, it looked like it was all the same content, but I think some of it was actually new content that looked a lot like the old content. I haven't quite decided if Instagram is helpful or not.
The other thing, though, is I am really pushing back on the monetization.
On Facebook I have stopped liking suggested pages from friends. Yes, your business is a part of your life, but it's not the same. I have unliked a few previously liked pages, and may do more but here's a fun fact: I have over 400 liked pages, with almost no effort. It will take a while to get rid of all of those, and I am not sure how much it will help. Scrolling does still mostly work on Facebook, so I am trying to scroll down more and engage more with actual people.
On Twitter I am muting every promoted tweet. I am also not sure how much this helps. I clearly haven't muted enough to keep new ones from coming up. I occasionally mute people they seem to want me to follow, but that is not the person's fault so I focus more on promoted tweets.
I can't even say that Twitter doesn't value my time; they do, but not in the way I value it. They provide a service that has been very enriching, and they seem to be doing everything they can to devalue it for me. We'll see how that goes.
My point for now is that what I value is people. Ironically, in the last week I cast off two. What was I thinking?
More on that next time.
I guess I should specify what I mean by "worse". Obviously the platforms have their own opinion.
I use social media to keep track of people I care about and am interested in. My favorite defunct Facebook feature was a Friends feed where I could scroll down and see the most recent post from every friend. That was great. It's been gone for years.
The change on Twitter seemed like an ordinary feed adjustment, but it limits how many tweets you see and makes scrolling much more difficult, where you are likely to lose what you want to see. Also, most of what you do see is promoted ads, because those are much bigger and they take up most of the screen.
In addition, Twitter has started putting tweets in my feed from people followed by people I follow. Retweets are one thing, and I was irritated when I saw tweets there that had merely been liked by people I follow, but just because a few people I follow follow this person you think I care about their tweets that my tweeps have not even engaged with? I do not.
I do care that it does not load new tweets at the same rate, seriously diluting it's real-time flow. I get that adding tweets I did not ask for is a way of trying to get me to engage more, but ironically it means that I see the content that I want to see less.
I get that the platform providers want to make money, and ads are a way of doing that. Despite all the panicked rumors of Facebook starting to charge, that has never happened, and it wouldn't even make sense for it to happen. They make too much money already from selling ads and providing data. Sure, greed means they will always want more, but they would lose more in their ability to sell us than they would gain from charging us.
This is a separate question from whether I want to support the various social media companies at all. I have concerns about it, but I don't have any good alternatives so I continue to use them even knowing that these are not good people and that they tend to support more white supremacy and misogyny and harassment not as a bug, but as a feature.
No, this is about - since I remain - how do I make it serve my purposes?
Some of that is personal adjustment. I try and make more of a point of noticing who posted the things that interest me. That way if I lose them on the scroll I can find my way back to them. I also try and pay attention to whom I am seeing and who has been missing. Individual look-ups may be the key.
I am also thinking about checking Instagram more regularly. The first time I tried it, I did see things from people I don't normally see posts from. The second time I checked, it looked like it was all the same content, but I think some of it was actually new content that looked a lot like the old content. I haven't quite decided if Instagram is helpful or not.
The other thing, though, is I am really pushing back on the monetization.
On Facebook I have stopped liking suggested pages from friends. Yes, your business is a part of your life, but it's not the same. I have unliked a few previously liked pages, and may do more but here's a fun fact: I have over 400 liked pages, with almost no effort. It will take a while to get rid of all of those, and I am not sure how much it will help. Scrolling does still mostly work on Facebook, so I am trying to scroll down more and engage more with actual people.
On Twitter I am muting every promoted tweet. I am also not sure how much this helps. I clearly haven't muted enough to keep new ones from coming up. I occasionally mute people they seem to want me to follow, but that is not the person's fault so I focus more on promoted tweets.
I can't even say that Twitter doesn't value my time; they do, but not in the way I value it. They provide a service that has been very enriching, and they seem to be doing everything they can to devalue it for me. We'll see how that goes.
My point for now is that what I value is people. Ironically, in the last week I cast off two. What was I thinking?
More on that next time.
August 23, 2019
Band Review: All The Beautiful Skies
All The Beautiful Skies is a collaboration between singer Suzie Potts and guitarist Craig Gibson, who was previously reviewed as part of Manchester indie band Puppet Rebellion:
http://sporkful.blogspot.com/2013/07/band-review-puppet-rebellion.html
Back then it was looking to me like Manchester was the British equivalent of New Jersey, producing strong and meaningful rock. This is a different sound.
There is a softer sound to All The Beautiful Skies. It can be piercing and haunting, a bit reminiscent of Enya at times. The beats still know their rock roots, but the emotional impact is different. This can especially be felt on "Save Your Towns", a song that washes over you and then strikes you at the core.
There are not currently many songs available online, but the recordings are recent so there may be more coming.
https://www.allthebeautifulskies.com/
https://www.facebook.com/All-The-Beautiful-Skies-111201296254543/
https://www.youtube.com/channel/UC0XokeGOy6mfzfrMct3gSQg
https://soundcloud.com/allthebeautifulskies
https://twitter.com/atbskies
http://sporkful.blogspot.com/2013/07/band-review-puppet-rebellion.html
Back then it was looking to me like Manchester was the British equivalent of New Jersey, producing strong and meaningful rock. This is a different sound.
There is a softer sound to All The Beautiful Skies. It can be piercing and haunting, a bit reminiscent of Enya at times. The beats still know their rock roots, but the emotional impact is different. This can especially be felt on "Save Your Towns", a song that washes over you and then strikes you at the core.
There are not currently many songs available online, but the recordings are recent so there may be more coming.
https://www.allthebeautifulskies.com/
https://www.facebook.com/All-The-Beautiful-Skies-111201296254543/
https://www.youtube.com/channel/UC0XokeGOy6mfzfrMct3gSQg
https://soundcloud.com/allthebeautifulskies
https://twitter.com/atbskies
August 22, 2019
Band Review: Badger Cats
On Twitter I have been befriended by Rigby Cats and Badger Cats. When they sing together they are Badger Cats, and they are pretty fun.
It is not a highly professional system; currently mainly covers and possibly recorded somewhat spontaneously. I think better recording equipment would make a difference. A message from Rigby Cats referring to more songwriting and a web site indicates that could change.
For now, if you are into cats, homeless advocacy, and covers from a surprising variety of musicians, you may want to check them out.
https://twitter.com/BadgerCats
https://twitter.com/RigbyCats
https://www.youtube.com/channel/UCZbPkp5ibRVob9E4rBsHMJA/v
It is not a highly professional system; currently mainly covers and possibly recorded somewhat spontaneously. I think better recording equipment would make a difference. A message from Rigby Cats referring to more songwriting and a web site indicates that could change.
For now, if you are into cats, homeless advocacy, and covers from a surprising variety of musicians, you may want to check them out.
https://twitter.com/BadgerCats
https://twitter.com/RigbyCats
https://www.youtube.com/channel/UCZbPkp5ibRVob9E4rBsHMJA/v
August 21, 2019
Making it up as I go along
Last night I wrote a whole post on how dementia care giving is like improv, and then it didn't feel right and I deleted it and started over.
Tonight I attended a class on caregiver stress, and the instructor talked about how it is like improv too. Perhaps I was just getting ahead of myself.
Possibly the most important thing said was a reminder that the patient can't change, so you have to. The sense in which that was said was true.
In a different sense, they change all the time. It's been quite a while now that our mother has not believed this is her house, or that there is not another set of her youngest, and that any of the different cats that she sees here belongs to her, though she does believe she has a cat and she worries about it. However, just today she asked about the dog, and said Adele wasn't her dog. One of the few assurances we have been able to give her has been showing her the dog so she can see that the dog is fine. Twice today she got confused about that. We were able to talk her down, but that will probably only get harder.
We will have to adjust. That will involve coming up with multiple responses, and figuring out which one is best at any given time. Sometimes you say something that has worked before, and then it just doesn't. That's when you need to change; saying the same thing louder will not force it to work.
A lot of the information on dementia was familiar; I have been at this for a while and I study hard.
It was also really about the stress the caregiver has, not the dementia itself.
They did an early scene (scripted, not improvised), where after having to repeat the same information multiple times the caregiver yelled at her mother, and the anger felt real. It was a little scary.
(I am relatively good at repeating the same thing multiple times.)
What was more applicable was the part about building teams of support - which I have not done - and the much higher percentage of hospitalizations for caregivers who were not in support groups.
Fun story: I know of a support group that meets nearby, but they meet at 10AM on Wednesdays. What caregiver has weekday mornings free? I can only assume it's to keep the attendance manageable. Or a sick joke.
And I don't want to end up in the hospital.
Recently I have felt illness coming on and been able to head it off, but then I got this image of me after all of this is over just throwing up everything in my body and being hospitalized with dehydration and wildly out of control blood sugar.
Delving into that image, it felt like it could signal that if I just kept stuffing all emotions - grief, fear, anger, stress, and everything else - down to keep myself functioning, then there could be a terrible recoil when taking care of my mother ends.
I can't rule out a physical somatic response, but that could all be metaphorical. I could just end up a raging crying mess too. There are a lot of possibilities for what reactions can happen, and what will happen between now and then. Don't take anything too literally, is what I am saying here.
My conclusion was that I needed to make sure that I was letting off steam and getting things out on a regular basis; that build up would not be healthy, regardless. Shortly after that I blew up at my sisters, which was totally not how I saw that going, and not a permanent solution anyway.
What I am saying here is that there are things to work on, and I continue to study.
I don't know if I will be writing about that next week, but I am thinking of it.
Tonight I attended a class on caregiver stress, and the instructor talked about how it is like improv too. Perhaps I was just getting ahead of myself.
Possibly the most important thing said was a reminder that the patient can't change, so you have to. The sense in which that was said was true.
In a different sense, they change all the time. It's been quite a while now that our mother has not believed this is her house, or that there is not another set of her youngest, and that any of the different cats that she sees here belongs to her, though she does believe she has a cat and she worries about it. However, just today she asked about the dog, and said Adele wasn't her dog. One of the few assurances we have been able to give her has been showing her the dog so she can see that the dog is fine. Twice today she got confused about that. We were able to talk her down, but that will probably only get harder.
We will have to adjust. That will involve coming up with multiple responses, and figuring out which one is best at any given time. Sometimes you say something that has worked before, and then it just doesn't. That's when you need to change; saying the same thing louder will not force it to work.
A lot of the information on dementia was familiar; I have been at this for a while and I study hard.
It was also really about the stress the caregiver has, not the dementia itself.
They did an early scene (scripted, not improvised), where after having to repeat the same information multiple times the caregiver yelled at her mother, and the anger felt real. It was a little scary.
(I am relatively good at repeating the same thing multiple times.)
What was more applicable was the part about building teams of support - which I have not done - and the much higher percentage of hospitalizations for caregivers who were not in support groups.
Fun story: I know of a support group that meets nearby, but they meet at 10AM on Wednesdays. What caregiver has weekday mornings free? I can only assume it's to keep the attendance manageable. Or a sick joke.
And I don't want to end up in the hospital.
Recently I have felt illness coming on and been able to head it off, but then I got this image of me after all of this is over just throwing up everything in my body and being hospitalized with dehydration and wildly out of control blood sugar.
Delving into that image, it felt like it could signal that if I just kept stuffing all emotions - grief, fear, anger, stress, and everything else - down to keep myself functioning, then there could be a terrible recoil when taking care of my mother ends.
I can't rule out a physical somatic response, but that could all be metaphorical. I could just end up a raging crying mess too. There are a lot of possibilities for what reactions can happen, and what will happen between now and then. Don't take anything too literally, is what I am saying here.
My conclusion was that I needed to make sure that I was letting off steam and getting things out on a regular basis; that build up would not be healthy, regardless. Shortly after that I blew up at my sisters, which was totally not how I saw that going, and not a permanent solution anyway.
What I am saying here is that there are things to work on, and I continue to study.
I don't know if I will be writing about that next week, but I am thinking of it.
Preparing for Alzheimer's
Maybe this should have gone on the Provident Living blog.
I know I have blogged before about how all of my aunts watched The Bold and the Beautiful, but I don't think I mentioned that they and my uncles also all did the crossword every day. It took Mom's illness for me to realize that was probably at least partially a response to seeing their own mother succumb to dementia. That was their way of fighting it.
And one of them got it anyway. I don't know. Maybe two out of six siblings isn't bad.
My mother never did crosswords. She had never really enjoyed reading or puzzles or anything like that. Her thing was being a wife and mother. That involved a lot of cleaning that she was great at. When she started working it was at housekeeping and janitorial, so a natural extension of what was familiar.
I wish sometimes that it had been different. Back in the early 90s there had been some discussion about her training to become a CNA, after a friend did it. I wonder if that would have changed things or given her more time. If she had started doing the crossword, would that have helped? What if she had started reading romance novels like some of my friends' mothers? I'm not even saying the smutty ones. It's still reading.
Probably some changes wouldn't have hurt. There is a lot of information out there on keeping your brain young and avoiding brain fog. With her having it, though, there are some things that I especially wish.
I wish she'd had some kind of tactile hobby, like crocheting or drawing or playing the piano. I wish there was something with a lot of muscle memory involved that could keep her busy and bring her some satisfaction now. The cleaning was the biggest thing for a while, but a woman who could clean two houses plus her own every day and then offices at night, well one house isn't that much of a challenge for her, even before she started losing some of her abilities there. I wish we'd had something else.
I wish we had taken better care of her joints. For one, when she was cleaning houses by day and buildings by night, it beat up her body a lot. (Though the friend who became a CNA really messed up her back while attempting to help one patient, so there are always risks.) In addition, while Mom was resisting the surgery she held her knees stiffly a lot, and the knee replacement fixed a lot of the pain, but not the stiffness. Of course, we never could have afforded the surgery before she was on Medicare, but they had gotten really bad a few years before. Greater mobility could help with greater activity, and that is valuable on many levels.
There's one other thing that I know we could never have pulled off, but it would have helped.
I read a story about a couple who nicknamed the dementia when the husband started getting it but was still aware. It became a joke for them, and a way of being lighthearted about it.
That's why I don't think we could have done it; Mom hated her diagnosis too much to find any humor. However, I think there will be times for that couple when it is not just that he forgets something, but he is starting to believe something not true, and the reference to "Ollie" will help him believe her. Eventually that will stop helping too, but I would take any extra help we could get.
I know I have blogged before about how all of my aunts watched The Bold and the Beautiful, but I don't think I mentioned that they and my uncles also all did the crossword every day. It took Mom's illness for me to realize that was probably at least partially a response to seeing their own mother succumb to dementia. That was their way of fighting it.
And one of them got it anyway. I don't know. Maybe two out of six siblings isn't bad.
My mother never did crosswords. She had never really enjoyed reading or puzzles or anything like that. Her thing was being a wife and mother. That involved a lot of cleaning that she was great at. When she started working it was at housekeeping and janitorial, so a natural extension of what was familiar.
I wish sometimes that it had been different. Back in the early 90s there had been some discussion about her training to become a CNA, after a friend did it. I wonder if that would have changed things or given her more time. If she had started doing the crossword, would that have helped? What if she had started reading romance novels like some of my friends' mothers? I'm not even saying the smutty ones. It's still reading.
Probably some changes wouldn't have hurt. There is a lot of information out there on keeping your brain young and avoiding brain fog. With her having it, though, there are some things that I especially wish.
I wish she'd had some kind of tactile hobby, like crocheting or drawing or playing the piano. I wish there was something with a lot of muscle memory involved that could keep her busy and bring her some satisfaction now. The cleaning was the biggest thing for a while, but a woman who could clean two houses plus her own every day and then offices at night, well one house isn't that much of a challenge for her, even before she started losing some of her abilities there. I wish we'd had something else.
I wish we had taken better care of her joints. For one, when she was cleaning houses by day and buildings by night, it beat up her body a lot. (Though the friend who became a CNA really messed up her back while attempting to help one patient, so there are always risks.) In addition, while Mom was resisting the surgery she held her knees stiffly a lot, and the knee replacement fixed a lot of the pain, but not the stiffness. Of course, we never could have afforded the surgery before she was on Medicare, but they had gotten really bad a few years before. Greater mobility could help with greater activity, and that is valuable on many levels.
There's one other thing that I know we could never have pulled off, but it would have helped.
I read a story about a couple who nicknamed the dementia when the husband started getting it but was still aware. It became a joke for them, and a way of being lighthearted about it.
That's why I don't think we could have done it; Mom hated her diagnosis too much to find any humor. However, I think there will be times for that couple when it is not just that he forgets something, but he is starting to believe something not true, and the reference to "Ollie" will help him believe her. Eventually that will stop helping too, but I would take any extra help we could get.
August 19, 2019
Music Therapy
After writing about diabetes for a week, I wanted to spend a week on dementia. It is getting a little late in the day.
I had been feeling pretty good about having had two weeks of consistent blogging, with posts on all three blogs on the appropriate days and new bands reviewed and all of that. I would like to keep it up, but I don't know if I can. Maybe this week will explain more why.
However, today I want to write about one thing that is going pretty well, only possibly not. That kind of ambiguity comes up all the time with dementia.
My mother has always enjoyed music, and songs she has strong relationships with elicit more of a response. I checked the Three Tenors concert DVD out from the library, thinking she would like it. She loved it.
Beyond that, she especially loved certain parts of it, and I started realizing that the music that resonates most for her are songs that her father sang and loved. He sang all the time, possibly with more spirit than skill, so family resemblances are a thing.
He loved opera, especially Verdi, but also other classic Italian songs and songs that were popular when my mother was young. I have played some opera that is pretty but wasn't so much his. She likes it, but the songs that he liked touch a certain chord. She connects to it in a special way.
That's good, right? Probably.
She often gets teary-eyed listening to it. That could be a concern, but I think they are happy tears. Also, it connects her more to Italy.
It has been a while now that she has not believed this is home, but she used to think her home was somewhere nearer. It is now more frequent that she is remembering the home she grew up in.
That could actually be an improvement. When she had a place in mind that didn't exist, we could never take her there; her childhood home still exists, and is inhabited by her nephew and his wife. It looks different now, and it would probably only feel like home for a minute, and it would take a lot to get there, but it exists. Mainly it matters now that she is remembering home is Italy because she frets over having ID, saying that they will ask her for it when she goes home. (The news may not help with that either.)
It would probably be better if I could make her feel more connected to this house and these people, but I still think it helps that there is some connection.
Therefore, I have printed out lyrics and we have started singing, as well as listening. We have mainly been working on "O Sole Mio". She often wakes up with it in her head, not knowing why, and then saying she doesn't know the words when I say we are going to sing it, but she is relying on the lyric sheet less.
Today I just added "Come Prima". I told her when we know ten songs we will throw a concert. She laughed, but it was something she was happy about, and then I knew what to do with her next, and those moments are little miracles.
Then I had to make dinner and she got very restless. I need to leave more little tasks available, I guess. It's hard to plan it all out.
Recently we had a really good music session, I thought, but immediately after wrapping up she said she should be getting home. That felt like a failure, but it's not as simple as that. It never is.
For now I believe it is good for her, so we will keep doing it. Dementia care giving is a lot like improv, except that you are the only one committed to saying "yes". So when there is a definite "yes", you take it.
I had been feeling pretty good about having had two weeks of consistent blogging, with posts on all three blogs on the appropriate days and new bands reviewed and all of that. I would like to keep it up, but I don't know if I can. Maybe this week will explain more why.
However, today I want to write about one thing that is going pretty well, only possibly not. That kind of ambiguity comes up all the time with dementia.
My mother has always enjoyed music, and songs she has strong relationships with elicit more of a response. I checked the Three Tenors concert DVD out from the library, thinking she would like it. She loved it.
Beyond that, she especially loved certain parts of it, and I started realizing that the music that resonates most for her are songs that her father sang and loved. He sang all the time, possibly with more spirit than skill, so family resemblances are a thing.
He loved opera, especially Verdi, but also other classic Italian songs and songs that were popular when my mother was young. I have played some opera that is pretty but wasn't so much his. She likes it, but the songs that he liked touch a certain chord. She connects to it in a special way.
That's good, right? Probably.
She often gets teary-eyed listening to it. That could be a concern, but I think they are happy tears. Also, it connects her more to Italy.
It has been a while now that she has not believed this is home, but she used to think her home was somewhere nearer. It is now more frequent that she is remembering the home she grew up in.
That could actually be an improvement. When she had a place in mind that didn't exist, we could never take her there; her childhood home still exists, and is inhabited by her nephew and his wife. It looks different now, and it would probably only feel like home for a minute, and it would take a lot to get there, but it exists. Mainly it matters now that she is remembering home is Italy because she frets over having ID, saying that they will ask her for it when she goes home. (The news may not help with that either.)
It would probably be better if I could make her feel more connected to this house and these people, but I still think it helps that there is some connection.
Therefore, I have printed out lyrics and we have started singing, as well as listening. We have mainly been working on "O Sole Mio". She often wakes up with it in her head, not knowing why, and then saying she doesn't know the words when I say we are going to sing it, but she is relying on the lyric sheet less.
Today I just added "Come Prima". I told her when we know ten songs we will throw a concert. She laughed, but it was something she was happy about, and then I knew what to do with her next, and those moments are little miracles.
Then I had to make dinner and she got very restless. I need to leave more little tasks available, I guess. It's hard to plan it all out.
Recently we had a really good music session, I thought, but immediately after wrapping up she said she should be getting home. That felt like a failure, but it's not as simple as that. It never is.
For now I believe it is good for her, so we will keep doing it. Dementia care giving is a lot like improv, except that you are the only one committed to saying "yes". So when there is a definite "yes", you take it.
August 16, 2019
Band Review: New Chums
New Chums is a Phoenix-based indie band.
Their newest release, this year's "I Won't Let You Go", has kind of classic emo vibe, or I might just be primed to think that based on some of my current listening.
From the 2017 EP See It for Myself, I also notice some similarities to Neon Trees, based largely on the vocal delivery of singer and guitar player Seth Boyack.
That may be most audible on my favorite track, "The Right Thing", but it is the instruments that really stand out. Guitars by turns grind and then lightly transport, allowing the music and emotion to carry you away.
New Chums also contains Ben Hedlund on drums, Cassandra Clark on bass, and Matt Lloyd on guitar. Oddly, they have a song called "Disposable Music", but this is worth hanging on to for a while.
https://www.facebook.com/newchumsband/
https://www.instagram.com/newchums/
https://www.youtube.com/channel/UC6lRmzuFi7-hcccqeq7sIMg
https://twitter.com/newchumsband
Their newest release, this year's "I Won't Let You Go", has kind of classic emo vibe, or I might just be primed to think that based on some of my current listening.
From the 2017 EP See It for Myself, I also notice some similarities to Neon Trees, based largely on the vocal delivery of singer and guitar player Seth Boyack.
That may be most audible on my favorite track, "The Right Thing", but it is the instruments that really stand out. Guitars by turns grind and then lightly transport, allowing the music and emotion to carry you away.
New Chums also contains Ben Hedlund on drums, Cassandra Clark on bass, and Matt Lloyd on guitar. Oddly, they have a song called "Disposable Music", but this is worth hanging on to for a while.
https://www.facebook.com/newchumsband/
https://www.instagram.com/newchums/
https://www.youtube.com/channel/UC6lRmzuFi7-hcccqeq7sIMg
https://twitter.com/newchumsband
August 15, 2019
Band Review: The Tattered Saints
The Tattered Saints are a rock band from Tampa Bay, Florida that takes more influences from New Jersey, a la Bruce Springsteen and the Gaslight Anthem. There is a gritty vibe, building off of three guitars and throaty vocals.
There is not a lot out right now. The We Started Young EP (available on Spotify) has three songs, including the title track. It appears that other music has been made, and you can hear two of the songs via their Youtube videos, but currently the concentration seems to be on what is new and what is coming next.
I guess that displays some optimism, despite the grittiness.
It looks like they will be playing with Dave Hause and the Mermaid in Tampa on September 5th, and that feels like a good match.
https://www.thetatteredsaints.com/
https://www.facebook.com/TatteredSaints/
https://www.youtube.com/channel/UC_IsA4un-3CniNvfYIEb0vQ
https://twitter.com/TatteredSaints
There is not a lot out right now. The We Started Young EP (available on Spotify) has three songs, including the title track. It appears that other music has been made, and you can hear two of the songs via their Youtube videos, but currently the concentration seems to be on what is new and what is coming next.
I guess that displays some optimism, despite the grittiness.
It looks like they will be playing with Dave Hause and the Mermaid in Tampa on September 5th, and that feels like a good match.
https://www.thetatteredsaints.com/
https://www.facebook.com/TatteredSaints/
https://www.youtube.com/channel/UC_IsA4un-3CniNvfYIEb0vQ
https://twitter.com/TatteredSaints
