The Caregiver & Dysfunctional Families: How are you doing?

Not doing well at all! To make a long story short, my dad is back at home after being in therapy for a few months at the swing bed in the hospital and then at the care center. We found someone ( a friend of his) to stay with him but because of his attitude, the friend left after a week! So now, he only has me and another person trying to help. I know I could walk away because of the emotional abuse I endured from him ( and still do) during my childhood, but my heart will not let me but it is wearing me down. Something is going to have to be done. He needs the help, but he could actually do better if he put forth effort.

Gersh, I sympathize. When your quality of life is suffering this long, please find your fight within you. I don't know what will help you, but something will. Long covid and situational depression/anxiety; maybe you're experiencing one or both. Maybe your body/brain needs deeper nutrition or outside stimulus (i.e., doing something different and challenging).

Psychiatrists are not ideal helpers here, as discussed, but that is always an avenue to try. I think trying something is better than trying nothing because we affirm that 1) we need treatment, and 2) we are worthy of treatment. So it's a kind of affirmation of ourselves, imo, just by seeking care.

Whatever it takes to signal to your brain that you deserve better. Find that thing, anything; go do it. Intense self-care is an option, too. Spoil yourself silly for a week..? But really overdo it. lol

Can you do something different to get out of the rut? Will your hubs divorce you if you take a 3-day road trip by yourself to somewhere interesting and beautiful so you can gain some inspiration from nature? lol

I'd tell you what I tell myself: find your fight. I know it's so hard, but what are the options? If you don't like how you're feeling, and it's changed you into someone you don't identify with, then I feel like we have to do something different. Maybe that would be researching wellness supplements that you think could boost how you're feeling and starting a regimen of them. Maybe it would be scheduling a half-mile walk every day and sticking to the schedule no matter what.

Idk what would help or what you already do or don't do, but change up your behavior so you can change your mind.

I found this Ted Talk interesting. https://www.ted.com/talks/amy_cuddy_your_body_language_may_shape_who_you_are?language=en

According to the compassionate and smart sociologist Ms. Cuddy, all one has to do to increase testosterone (which we all have, male or female) to feel more powerful and decrease cortisol to reduce stress reaction is to raise your arms above your head and lift your chin up for two minutes.

I've been doing this randomly while walking around the past few days since I watched this. I feel crazy. lol I also feel like I have nothing to lose here. 💖

Yoda, I totally get what you said about not having much to say anymore. I've been suffering from depression/anxiety for over a year now. I think it all started with my foot problems, then getting covid seemed to exasperate it all.

My personality has changed. I've lost my spark. It occasionally peeks through but I really just haven't been myself for a while now.

Ali, I get what you said about Dr's and how they misdiagnose, prescribe something which may or may not be what the patient needs. Then the weaning off process, starting another med which may or not be what you need etc. It can be a vicious cycle and the patient suffers for it.

I still come on here and read posts but seldom post anymore. But I still pray for you all every night.

continued

Re anxiety - dd and dgd both have that. Talking things through helps as well as ADHD meds. Anxiety is a big thing with CFS/FM. I feel my anxiety is often "physically/neurologically" based. Talking things through does help there too and also taking things that lower brain inflammation and balance GABA/glutamate.

I had a session of anxiety a few weeks back, for no particular reason I could identify, so I tried 600 gm GABA as I know in CFS/FM sufferers the GABA/glutamate balance is off. By 1/2 to 1 hour my brain was back to normal. What a relief. That is now part of my "tool kit". I do use 100-200 mg GABA at night fairly often to help me settle down to sleep.

Well, my somewhat foggy brain is running out of steam. This hasn't been my best day.

Hope what I have written makes sense.

Share all you want, Ali, if doing so helps you. (((((((hugs))))))

I read it too Ali. I totally agree with your assessments. I hope none of us here would judge you for sharing anything.

I have experienced a few "spot diagnoses" which were so out of line. One the intern diagnosed an ulcerated hammer toe and sent me on my way. In fact it was an infected blister and by that evening I nad red streak up to my knee. Fortunately I knew where to get help and with a few antibiotic injections and a course of oral anti-bs I recovered. That's only one.

I think you are looking at the right things to figure your problems out. In our family genetics go a long way to explaining certain conditions.

As far as psychiatrists go - for the most part for me - pffft! At one point CFS/FM was thought to be "in your head". What a bunch of nonsense that turned out to be. As you say, they are taking a shot in the relative darkness. On the other hand dd sees a psychiatrist and that had greatly benefitted her. She asked for testing for ADHD, it was confirmed and she is on meds for it. Other family members have it, probably including me, but it has not been a big enough problem for me to pursue. She is also on a mix of antid's which work for her. It has taken years to sort all this out. She has gone back to him with her feedback and they have finally arrived at a cocktail that works well for her. Your first year guy wasn't prepared to go that route obviously. To me that is how psychiatry should work but often doesn't.

For me, I believe first and to get a thorough medical check up to identify any physical problems. Then I look for a good counsellor with a social work background. I have had much better experiences with them than with psychologists or psychiatrists. Even if our problems are psychologically or psychiatrically based, so to speak, we can use the support of a good counsellor to help us figure it all out. At least that has worked for me.

And we can't bypass the fact that even if we were born totally emotional, socially, spiritually and physically healthy, our dysfunctional families have had profound negative effects on us and we need work out the results of those effects as adults. I have made big progress in one particular area in the last 5 years. Counselling has helped me a lot with that.Ther's always room for growth.

Ali - if meds have limited your cognitive abilities, you are even more amazing than I thought you were. However, It does stand to reason that the problems/meds you describe yourself having would affect your cognitive abilities and certainly very much, affect your quality of life. And yet you excel at your studies! Oh my!!!

Ali - you are very qualified to speculate. You are living the conditions, You are an intelligent, educated woman - who is self aware. You know your family and yourself better than anyone.

"Am I missing something, or is this a terrible approach to treatment?" No!

For me the thing is that treatment has to be a cooperative effort with dr and patient -especially when the dr is a psychiatrist. (S)he doesn't know how you feel!!! You do!!!

You may well be misdiagnosed and mis-medicated. I am glad you are seeking a different route - maybe routes before you are satisfied.

I agree with everything you have written

Need - the same to you. I think everything you have written is so valid.

My boys ADHD affected their studies. They were called lazy etc. I paid for assessments and then marched on the schools and straightened some things out. At one point they were thought to be below average intelligence. Well, testing disproved that in spades. I could go on with stories...

I shudder to think what happens to those young people whose parents are not willing or able to advocate for them.

Running out of characters so I have to start a new post..

Ali,

I wish you well in your research.

People do attach stigmas because of ignorance. They like to say that kids are daydreaming or other things.

They can’t focus because they have ADHD, and as you say, their brain functions differently and requires meds.

People assume so many things about so many different situations. They don’t know that they don’t know.

Need, I sympathize with your daughter. I know that over the past year, there's been a shortage of ADHD meds.

There certainly shouldn't be any stigma. Treating the brain/nervous system is no different from any other medical condition. I'm supportive of anything that helps the individual have a better quality of life.

Society, in general, frames behaviors as something people do out of their own free will, so if there is antisocial behavior or lack of learning, then someone chooses to behave that way. They "didn't apply themselves" enough, or they didn't have good self-discipline. That type of assumption is always lacking a world of context, and sometimes it's just false due to varying underlying issues.

I want to see a neuropsychologist and sleep medicine specialist. I'm hoping I can gain new insight from specialized assessments that will help better define some of my long-term symptoms or rule things out.

Ali,

I think you hit the nail on the head by saying that these symptoms can be attributed to several different factors. This is why they can be difficult to diagnose.

I certainly understand why people who are experiencing symptoms want relief. In many cases the symptoms seem to overlap with others.

My youngest daughter is very intelligent but struggled with ADHD for a while before we figured it out.

I think about the kids long ago who had ADHD or dyslexia and no one knew what to do. Some learned how to cope with it and adapt, others suffered.

I know what you mean about the approach that is being taken to determine what the situation is.

I suppose a lot of it depends on if the doctor that was chosen is capable of diagnosing the symptoms correctly.

My daughter freaks out when there is a shortage on her ADHD meds at the pharmacy. One time she had to call four different pharmacies to find it.

I think there are many people who are struggling with issues and are afraid to ask for help.

There shouldn’t be any stigma attached to mental health issues. If meds are properly prescribed they are a godsend for people.

Ali, if you want a second opinion on your situation, you should look into it. If you feel like the diagnosis is correct and you are benefiting from the treatment, it’s confirmation that you are managing it well.

Hey Need, I second-guessed myself about posting my personal experiences and deleted that part of the post, but since you read it... And Thank You, because this is therapeutic for me to talk about, it's just complicated.

But the short answer is Yes. After several monthly sessions with a first-year psychiatrist, I was feeling frustrated with the lack of efficacy in my meds and felt this desperate need to communicate to them how much my anxiety was affecting and limiting my daily life. I needed help. I didn't think he was hearing me. I got flustered and started crying. He then pretty immediately declared I was textbook bipolar and rx'd mood stabilizers which I've taken for 4 years or so.

I would've accepted any medication at that time in my life, and mood stabilizers haven't been all bad, but they do numb my emotions and my brain's cognitive abilities some.

Here's what I think, based on a few decades of experience with psychs and being dx'd five different things... and them never continuing/concurring with the previous dx, just implementing a totally new one...

I think neurological conditions are much more inheritable than currently thought, and that at least some of what is dx'd as mental illness (i.e., a chemical imbalance in the brain) is more systemic neurology problems. I see evidence of this in my family on both sides. Different manifestations and varying degrees of things that might be called OCD, ASD, rumination in general, intermittent rage/explosive issues, episodic behavioral issues (which are associated with epilepsy and Tourette's, and probably many other neurological disorders but those happen to be the two I know about).

I am unqualified to speculate, but I'm going to do it anyway, based on my experience and observing my family tree and how different symptoms have manifested on both sides.

Interestingly, my two medications are anticonvulsants. That is a clue that what is called "mental illness" can be similar enough to neurological disorders that they are helped by the same medications. While there are only so many ways psychs/specialists can tinker with neurotransmitters/systems, the fine-tuned neurological dx is out of reach for now. Neuroscience may be the way forward.

I think a man or woman with my symptoms would be treated the same by a psychiatrist, but perhaps not a PCP. To me, this is part of the problem; if you go to a psych with mental health ("bad feelings") concerns, they're going to treat you according to their discipline. And since you need relief, you'll take the diagnosis and the medication and hope it helps. If it does, that's great. If it doesn't, then it's a world of gaslighting yourself into wondering if you feel what you really feel; docs gaslighting me (at times), saying that I don't feel what I feel.

In the absence of severe symptoms that require referral to other specialists, then the person is stuck taking whatever medication the psych guesses will help their symptoms based on the clustering/categorization of symptoms around group behaviors and group responses to medications.

It's not a good approach to treating individuals, for sure. There's no conclusive quantitative testing to ensure that a person fits the criteria for a DSM dx, or that they benefit from the medication. And these are powerful drugs that habituate the brain/body. Am I missing something, or is this a terrible approach to treatment?

I have far too many thoughts on this topic, but I'll leave off for now. :)

I hope I didn't ramble too much. lol xo

*Heart issues can cause fatigue/depression or anxiety symptoms. And if you go to a psych, they're going to say it's depression/anxiety, and rx SSRIs or anxiolytics because that's what their field does.

Psychiatric medicine really needs to discern better through improved diagnostic assessment and at least consider/rule out other causation instead of defaulting to mentalistic/circular reasoning. "You're anxious because you have an anxiety disorder." Pfft.

Ali,

Wow! On the spot diagnosis? I wonder how often this happens. Thanks for sharing your experience.

Just curious? Do you think this occurs more often with women than in men? Misdiagnosis?

I will tell you why I am asking. Your story reminds me of a situation that my friend had.

She has a heart condition that has been there since birth.

She went to a doctor who gave her a paper to read which listed a number of psychological symptoms, such as panic attacks, anxiety, etc. He then asked her to check off what was pertinent.

She said to him, “Are you showing me this list because you think that I am imagining my symptoms or that it is due to anxiety? I told you that something is physically wrong with me. My heart rhythms aren’t normal. If I were a man, you would be ordering tests for me.”

My friend left his office and made an appointment with another doctor who said that her dosage of her heart medication needed to be adjusted. That was why she was having her symptoms. It wasn’t anxiety. It wasn’t her imagination either.

Once her heart meds were adjusted she was fine. Had she stayed with her other doctor who knows what would have happened?

Yoda, that makes sense that you became more introverted. Antipsychotics block dopamine receptors, decreasing the pleasure and satisfaction you would otherwise get from interacting. (That's my layperson's explanation.) In time, I hope the effects wear off. And, there are chemical dopamine boosters (caffeine/stimulants) and behavioral boosters (exercise, games).

*I wrote then deleted several paragraphs of thoughts about misdiagnosis and mis-medication and why the practice of psychiatry is prone to it. I'll leave that discussion for another day, or never. lol I suspect I am currently mis-medicated based on an inaccurate mental illness diagnosis. Maybe sometime I'll talk more about that.

Yoda, I wish you healing.

Yoda,

I can’t imagine how you feel. I’m sure it’s devastating to be in this position.

Waiting for testing and results is unnerving. Plus, dealing with your wife’s health on top of everything is hard.

Please know that you can vent here anytime.

NeedHelp & Golden,

Thanks. This problem has brought me so low that my extroverted personality changed to introverted. I feel like I have very little if anything at all to say anymore.

It is humbling to see that something that I began 12 years ago in January is still an ongoing thread in which people are helping people in all sorts of dysfunctional situations! Ya'll have been helpful to me back then when I was trying to take care of my declining mom. Ya'll are helpful now as I face my challenges at almost 67. Thanks!

sharyn - thinking of you at this difficult time.

Yoda - hope things work out well for you

duck - hope the roller coaster ride is levelling out

ali - so sorry about your dad. Thankfully he is getting the care he needs and it's not your job to look after him any more. You are right about allergies. I am still developing them. I remember all the trouble you had with mold.

Glad I could give you a boost. My thoughts about Iceland were not just about the academic program, but also about the benefits of being in a different culture. Living and studying abroad was a very good and growing experience for me. I would recommend it to anyone.

Ali,

Very sorry to hear about your dad’s leukemia and COPD.

Ali, so sorry to hear about your dad.

My dad went to the hospital and is now back in IL with HHAs ordered by docs and is on hospice. He has leukemia (a slow-growing version), but his biggest issue is advanced COPD. He can't walk at all without getting short of breath. I never could get him to use the prescribed inhalers. He insists they don't work. My mother joked with me by text, "He will use the inhalers now." She knows I tried and tried to get him to use them, even after my hands-on days were over.

I don't have the mental energy to get too far into any feelings I have about this news. I have school projects and papers lined up straight through the next few weeks.

I told my mom to call me if there's a crisis, and I can come down. I'll call my dad tomorrow and give him a friendly pep talk.

I'm 90% certain I'm going to take a leave of absence from my school program after this term ends. I have questions that need answers; then, I'll come back (either to this uni or a different one) with an improved aim toward long-term goals.

Thanks so much for the support. It's great how just putting things out in writing here and getting feedback helps me gain some clarity on what the issue is. I journal some these days, but it's mostly a gratitude/carpe diem kind of journal. :) So... thanks. :) Always. 💙

Yoda,

So glad that your scan was negative. Hoping for good results with your upcoming tests.

Wishing you and your family all the best.

Ali,

Sorry, I posted twice.

My wife and I are up here with her sister-in-law. Her husband died last February. I think she has some brain fog at 69 for she accidently calls me by her husband's first name. My wife's health is not doing all that great either.

Ali,

Thanks! My narcolepsy test was postponed until the end of March because they overbooked me for testing when I was scheduled for the end of this month. Also, those anti-psychotics caused two permanent side effects which are not pleasant to live with.

The good news is that my Catscan was negative. I see a PT next week for a balance evaluation so that they will know how to help me.

Yes! Ali! Upward and onward. All the best to you always.

Sharyn I pray you are well. Stay strong.

Much love to you all.
Rays of light healing to us all

Golden, you gave me things to think about with regard to my choices and a very empowering pep talk about pursuing one's passions wherever they lead them. Thank you. I needed that.

My sinus infections seem to onset pretty reliably in the Fall, correlating with indoor heat being turned on for the first time. I'm inclined to think the dryness and the old dust circulating around is what's causing them, but I may have other susceptibilities. Thanks for putting dietary considerations on my radar. These things can change, too, and we develop new allergies we didn't have before. The sinus issues became a constant problem during "the mold years" and have bothered me since.

Duck, that's a wise observation. Thank you.

I'm going to sit with my feelings about quitting for a bit. I have more than enough work to keep busy for now.

I must find time to make local contacts and see who is practicing BG in my city or surrounding areas. There may be an acceptable option to gain supervision from someone local who is passionate and dedicated to BG practice. I have to explore that first; they may have specialized input for me. This seems like a good starter plan for figuring out what I need to figure out. lol

The increased clarity that's come out of this questioning, for now, is that I need specialists in this practice to give me input. The "regular" ABA professors, practitioners, and classmates can't help me here.

Onward and upward. :)

Wishing you all the best as you plan for your future Ali.

Ali stay focused the enemy stays busy

You are all in my heart and prayers

so-so

Ali,

I hope you feel better soon. It’s miserable to feel funky.

(((((Ali)))) Sorry about the illness and other issues. My sinus problems are related to allergies I had them for years and years before I discovered that. The way I identified the allergens was by elimination eating. Two weeks without any gluten -(wheat, barley, oats and rye). Sure made a difference and I have proceeded from there. Then later I tried two weeks without dairy and that made a big difference too. Now I eat wheat and dairy free and have to be very careful that foods are certified gluten and dairy free. If there is any contamination, which happens often in factories, I get very stuffy and have major sinus and head aches. Found I am allergic to oats too - even gluten free oats. Darn!!!!

As regards your future education, taking time to let your ideas and feelings settle is a good thing. You have accomplished so much in a short time. It's amazing to look back at the time when you were caregiving your dad and really didn't have much in the way of plans for your future and then look at where you are now. Awesome!!!

As regards going 1/2 way around the globe for your education - no problem. I started in McGill as an undergrad. Then went to Scotland and finished my first degree. The back to McGill for grad work, which didn't work out, then later to Alberta to finish my masters. Other than having a passion for my area of study, I found the most important thing was a supportive supervisor. I didn't have that at McGill, I did have that at U of A.

"I've found a whole new world and career." Don't limit yourself, Ali. The world is your oyster. Good old Shakespeare got lots of things right. You will never have a better time than you have now to explore and follow your dreams. I'm full of cliches tonight but I think they are apt.

A more prestigious program will put you in contact with people who are well recognized in their field. That doesn't hurt.

Look after your health. That's a high priority. I know you can grind through, but I think you owe it to yourself to consider other possibilities since doubt about your current path has entered the equation.

I have confidence that you will work it out! Keep us updated.

Appreciate you always, Golden.

Need, thank you for the kind words.

I'm disappointed to feel this unsure about continuing because I was dead set on getting through this program.... which I CAN DO just by "grinding it out" over the next 8-12 months. And now I have doubts that it's the correct/optimal avenue for me. Maybe sleeping on it over the next few weeks will help my brain settle on one plan or another.

I've been under a lot of extra stress lately from illness and other problems. That always adds extra confusion to my brain.