notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
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I learned what I was doing is called external processing. There's another component for me, called social perspective-taking. I don't think these behaviors are unusual in and of themselves, but the extent to which I do them is the unusual part. I've taken time since then to be more self-aware, make a note of things I do throughout the day, and figured out that I'm constantly scripting and a handful of other spectrum-like behaviors. So, Idk, I need to see where this thread leads and try to unravel it all. I'll add more later, if it's of interest to anyone. Big (((((hugs)))))
That's a really wonderful gift: having a therapist who gets you. I'm happy for you. I think my new therapist is on the right track, at least. I like the approach of this "sensory integration" clinic, in general.
Yes, anxiety is my chief complaint; I don't think I experience it like most other people do, though. I have a really difficult time with wake-sleep and sleep-wake transitions, and that's been true since young childhood. A psych once asked me, "What are you thinking about when you can't sleep?" I said, "Nothing, I just can't sleep." And it's true -- I'm not worried about anything in particular; I'm worried that I can't sleep! :)
I had sensory issues in childhood that I never thought much about until recently. For example, even though I played on the high school softball team because of the school's small size, I could never catch a fly ball without wincing. I can't jump off the edge of a pool without wincing; I can't hold my breath without holding my nose because I can't isolate my windpipe fully. These and other symptoms are on a short list I look back on, and after using AI to look into them extensively, it seems they're all correlated with (a mild version of) a neurological condition. Also, I taught myself to read by age 3 and was the most advanced verbal student (spelling, reading, writing) throughout my childhood. My dad has what used to be called Asperger's Syndrome; he was an exceptional pianist by the time he was 18, and his "career" was as a jazz pianist, yet he could never really "get it together," work consistently, or take care of himself. I suspect I have a touch of it, too.
It may never have become much of an impairment except for the environment I was raised in, and then decades of other hardships. I was first diagnosed with ADHD in 2001; I'd sought treatment after I couldn't keep up with my job duties, and I knew something wasn't adding up.
I took stimulant medication for a decade and had side effects so bad that I should have known the med caused them, but I didn't know. Stim meds are contraindicated for someone who has an AuDHD neurotype, and I can see/feel how they don't help me (I've been taking a small dose of Adderall daily for the past few years; it helped with school, and it does help some things, but I want to find a non-stim that helps; I've repeatedly asked my resident psychs for help with this, and they brushed me off, which is just one more reason why that clinic wasn't a good fit for me.)
I'm too good at "masking." Others will say I'm "quirky," if anything, but never would say that I have a disability. I complained repeatedly to my resident psychiatrists assigned to my case over the past 9 years; I think they collectively decided that since nothing (no medication) helps me, then I must have a personality disorder. lol And perhaps I do, Idk. (I don't think so.)
They didn't listen when I kept saying, and kept saying, "I can't sleep well. I'm tired all the time. I'm anxious all the time." The excitatory brake medication gave me relief from hypersensory irritability but never from the anxiety, and it came at a huge cost -- my verbal ability was so blunted. It's been awful; so hard to read and write. I became completely apathetic about socializing, and other side effects. That's too high a price to pay for reducing irritability. I need to find another medication or find a non-rx strategy to manage symptoms. This is why I must get a full neuropsychological assessment to determine the underlying issues and target them more effectively with whatever therapy, whether that's medication, new skills/routines, whatever.
Overall, I'm in a good place, I think. I've figured out a bunch of things that don't help me. My new job working at a children's learning clinic is part-time, starts at noon each day, and is a great baby step into the field. I have some time to work through my issues without taking on more work until I'm ready, though I hope I'm ready soon because I want to work full-time and accrue clinical hours for the higher board certification. ❤️
I’m recovering from a crash so I need a little more time to read your posts and consider my responses.
I finally found a good therapist a few years ago and have been working through my issues with her. She is the first one that truly “gets” me. She has been so good for me. It’s never too late.
chat more later.
Hugs Joan.
and congratulations oon your achievements. You have worked so hard and accomplished so much.
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Magnesium Oxide: This contains a high amount of elemental magnesium, but it has very low absorption in the digestive tract. It is mainly used to treat heartburn, indigestion, and constipation. [1, 2, 3]
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Magnesium Sulfate: Commonly known as Epsom salt, it is dissolved in warm water. It is used in baths to soothe sore muscles, though it is not an effective way to raise internal magnesium levels. [1, 2, 3]
Magnesium Lactate: Bound with lactic acid, it is easily absorbed and very gentle on the digestive tract. It is often used for people who need frequent, larger doses without stomach upset. [1, 2]
I was told to try magnesium to deal with the side effects of Mounjaro,
we all should be pretty regular then . lol
It's a safe titration, and symptoms are uncomfortable but manageable... which is to be expected.
Cw, thanks for the comment, friend. I worked very hard to put my life in order post-caregiving, and it's in order; now, I have to keep it that way. :) I agree with what you said re: different tools, tricks, and strategies that would help. The best help for sleep I've ever found is exercising first thing in the morning when I get up. I get pouty and think, "Why do I have to exercise in the am just to sleep on a schedule? Other people don't have to do that"... which is silly. It takes what it takes, and exercising in the AM isn't a punishment -- just something I don't want to do, but I can get used to it once the routine is established.
I've been very diligent about school and work for years. I held out hope during this time that if I said the right thing in the right way to the psych, they'd know how to help me, or if a medication gave me just a *little* help, long-term symptoms would smooth out. I no longer hold that hope, and my last appointment with my psychiatrist- and what she said to me- just made it so clear that she hasn't been hearing me. And maybe she can't because she's looking to categorize my issues according to her training, and that's the only framework she has.
I was emotional yesterday, having come on here soon after my 2nd therapy appt. The truth is, I'm keeping an open mind about all of this. It's possible that the damage from caregiving is mostly "just" some mental trauma that I never dealt with, and heaped on top of other hard times in my life, caregiving was extra impactful- it was a very scary time that went on for years. Maybe addressing the trauma of my life will help me shake it off better, and my anxiety will improve. Here's hoping.
Spnutrition Magnesium Bisglycinate Gummies
Helps sleep. The response is almost immediate. Slept through the night, with no 3:00 a.m. wake-up. Lasted for one week.
I had to stop because the fake sweetener was causing jumpiness during the day.
But will find a tablet/capsule of Magnesium Bisglycinate, no gummies for me.
Metabolae Ceylon Cinnamon 7200 mg. -going to be trying that. Panic/anxiety can be a response to changing blood sugar levels, like low blood sugar if you don't eat often enough.
You are not wrong about your perspective!
This is true:
"It's felt very much like a bad breakup with a toxic partner, where I was saying/complaining about the same issues over and over, and was being gaslit with sentiments along the lines of "You aren't feeling that way; you're actually feeling this way. But if you *are* feeling that way, it's because you're xyz, and your perspective/feelings aren't credible and we know better than you do." <- Seriously! This is how I perceive what they kept doing over and over!!"
One thought I had reading through your post is that maybe there is no "cure" for what ails you and you may be better off learning strategies to cope with that instead of looking for a fix. And I don't pretend to know anything about therapy buy it's always been my understanding that it shouldn't stretch on for almost a decade, I think that's a sure sigh it's not right for you.
I have an appointment in late September to start with a university-connected neurology/psychiatry/psychology department that specializes in women's behavioral health. And again, I didn't know such things existed until very recently—a women's behavioral health specialty, attached to a neurology dept/component? How cool! They consider things like menopause, history of abuse, and other factors that seem helpful in getting better care.
And if I can't get significant improvement from these resources, I'll pay the $3,500 cost of an in-depth neuropsychological assessment from a regional clinical psychologist who specializes in differential neurological diagnoses. I *will* sort out what flavor my issues are, and worry about the recipe that created them later. Any future medication needs to be guided by an accurate diagnosis; I'm not doing this "throw it at the wall, see what sticks" approach anymore. It's literally cost me so, SO much more than $3500 to do it that way.
I suspect there's an AuDHD diagnosis at the end of this journey. That's ok. And it would make sense for many reasons, going back to issues/symptoms I was experiencing even in very young childhood. And if you throw a bunch of trauma and years of mismedication on top of that, well... it's been confusing for me. But I also think the neurotype symptoms on their own are mild; the other things/experiences/medications exacerbated them.
I'll just have to sort it out. But I think I'm on a much better path to get there after the recent breakup with my old clinic.
Thanks for "listening." I know I rambled and I'm not going to edit due to time constraints right now. But I'll come back soon!
I really hope everyone's doing ok. And that you have the strength to fight your battles, and you're winning sometimes, hah. 😘
I wanted to share with you all and invite feedback: I recently "broke up" with my behavioral health clinic after 9 years. It's felt very much like a bad breakup with a toxic partner, where I was saying/complaining about the same issues over and over, and was being gaslit with sentiments along the lines of "You aren't feeling that way; you're actually feeling this way. But if you *are* feeling that way, it's because you're xyz, and your perspective/feelings aren't credible and we know better than you do." <- Seriously! This is how I perceive what they kept doing over and over!!
I've been so angry the past few weeks as I absorb this situation. I presented to this clinic in July 2017 (fresh out of 7 years of caregiving and still very much dealing with everything that went along with that time -- like me being sick and run down a lot, plus in 2017 I was houseless, jobless, and SO scared) with a few chief complaints: I have too much anxiety all the time, it's significantly impacting my quality of life, it runs me down, I need to get improvement so I can get to work on my life (heck, just getting to the grocery store without wanting to cry woud've been a win back then), I can't sleep well, brain fog, etc. These were the same "cluster symptoms," as I called them, that I'd had the whole time during caregiving.
Nine years later, I have the same complaints -- minus the daily pressure headaches, body pain, and sick stomach. I'm not as desperate for help now as I was back then, but I'm still scared/desperate (I'm wondering, can I perform in my new job role? Time will tell) and still have the same chief issues. And now I'm angry, too, which I think is actually good right now. Anger can motivate us to put our foot down and demand change, and I hope that's how I can channel mine.
Over the 9 years: Two documented misdiagnoses (that they corrected on their own without notifying me, because they recognized I didn't have the *whatever* label), countless meds tried where it seemed I always had atypical and sometimes SEVERE side effects, I've been told "don't Google your symptoms" as if the only reason I'm experiencing side effects is because I learned, after experiencing them, that, yes, this med can cause them in some people... Ugh!
And I come away with the same complaint as always: I have an anxiety problem. Maybe I always had it to some degree, maybe I'm hyper sensitive/sensory and also had a sh!tty childhood that gave me foundational anxiety issues, *BUT* it kicked into overdrive in 2012-13 when I had a massive toxic mold exposure, and it's never gone back to baseline since.
I have more I want to share and get input on, and this forum/thread was one of the best sources for feedback I could think of, as you've "known me" during caregiving and now 9 years later.
I'll stop there for now and end on a positive note:
I have a sensory integration therapist now. I didn't know there was such a thing, but I was looking specifically for behavioral health options that address sensory issues and found this provider; I had my 2nd weekly session with her earlier. I think this is going to be a great help! We are already talking about specific things I'd like to improve—like how difficult it is for me to read and write. She has experience working with others who have the same complaints! It seems that I'm finally in the right place to get help for some of these longstanding issues, or, at the very least, to gain better understanding and validation—which is incredibly valuable, regardless!
I have an appointment with a sleep specialist in 5 days. Idk if they can help me, but it's worth a shot. My new Fitbit is tracking my sleep, and the data might help put a name to this problem...
Had a mini crash the afternoon after a too strenuous walk the other day. Took a few extra pills, went to bed and slept, slept extra the next morning and am OK now - I think. I'll try another walk in a few days.
I used to walk and walk and walk...I miss that.
sheepherder -I'm sorry for your troubles. I understand. My sister was of no help and caused trouble when I was doing what I could for mother. But then, that was nothing new. She did it all our lives. Mother has gone, and I have cut contavt.
I was scrolling, asked Ai and FB offers up reels.
My memory has retained nothing, and my new fibro specialist did not want to see what I downloaded.
Suffering now from information dump. Not yet conversant on the topic.
I usually follow your advice and healthy lifestyle.
bundle -thx for the wisdom and laughs. You are so right. We have to build our lives despite what we have lost. No one will or can do it for you.
send - new treatments for FM??? -
Yesterdayanurse- welcome. Ding-a-lings could be dysfunctional, as could volatility and drama seeking. Certainly sounds draining,.Can you detach a bit for your own sake?
May 20 was my mother's birthday. Brought back some memories - not good ones. I am so glad that is over. It's more than 7 years since she passed so I can get rid of some documents and will. Had news from my nephew that my sister has had a hip replacement and is doing well. That's great. I still don't want any contact. My life is betetr without it. Have a good one, everyone. 😊
🥰
“No one is coming to apologize for the years you lost.
You either build from here. Or spend the rest of your life bleeding over old wounds.”
i just saw this funny quote, and it kind of fits with “words of wisdom”:
”I have decided I no longer want to improve myself.
I am a beautiful disaster.
And I accept myself as such.
So bless this mess.”
🙂🌈
I am shocked how many symptoms can be explained.
There is no cure.
I realize there is so much more to learn....
“No one is coming to apologize for the years you lost.
You either build from here. Or spend the rest of your life bleeding over old wounds.”
🙂
today’s words of wisdom:
🥰
“I'm not sure what's tighter: my jeans from high school or my grip on the past.”
“This is how you love yourself. Instead of begging for the pain to go away, you choose to hear what your pain is begging of you.”
“The scars you can’t see are worse than those you can. Heal them, and you’ll heal yourself.”
🌟🌟🌟🍀🍀🍀🌟🌟🌟
Lylii1 - you sure have a lot to deal with., Your autistic kids may not be able to help. Glad your husband can help, but sorry his health is not good. I don't know if it is dysfunctional or not but it sure is hard. Can you get any outside help for your mom? Does she have any money to hire them? It would help if you could fill out your prifile and give more details about your situation - is your mom living with you? what health conditions does she have, how much support does she need? do your kids live at home? and so on. Wishing you well. I know this is really tough.