The Caregiver & Dysfunctional Families: How are you doing?

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.

Sharyn, I know it's not the same as being there, but maybe consider asking someone in your family to livestream the service for families who can't attend. I'm sorry. I do think your plans for your sis's ashes are special and a lovely way to honor and remember her.

Are you certain you can't attend? There are discount travel sites; maybe you can hunt around and find something that fits your budget. ?

Ali - I just lost a long post to you. Need to regroup before I post again.

Yoda, I sympathize with the misdiagnosis. I've had a few of those in my lifetime. I don't subscribe to the theories of mental illness categories all that much after my experiences with different dx and different meds. I get there are conditions/symptoms that exist but they are too abstract at present for universal practical use... something like that.

Sometimes, it seems to me like present-day psychiatry is throwing things at the wall to see what sticks and doing this with powerful chemicals and unsuspecting clients. Maybe advances in neuroscience will help get the field more accountable.

It's a real shame that you would be given antipsychotic medication if your issue is indeed narcolepsy. I'm glad you're getting a brain scan. Maybe consider getting an assessment from a neuropsychologist, too. I plan to see one when I have time and pay for it out of pocket if necessary because I want better information about my symptoms/behaviors. Going to psychiatrists hasn't helped me.

sharyn (((((hugs))))) You sure are getting it from here and there. In your position, I would feel slighted. Your grand niece's wants have been put ahead of your needs so to speak. But at the same time causing conflict is not what you want at this time. Your plans for your sis's ashes are great. Grieving goes in past the funeral and a personal time with memories of the LO can be very healing.

I;m sorry about the ongoing issues with food and finances with your dh. Considering that you have had one major loss it is not unusual for others to come forward in your mind. Please do what is good for you. You can't change him. I know it is hard seeing a loved one do things that are not good for them.

Prayers for peace for you and healing.

Ali,

You’ll figure out what is best for you personally. As always. I wish you well.

It seems like the one ‘constant’ in life is change.

You are correct in saying that we can have the best plans laid out and then things sometimes change and move in a different direction.

Sharyn, that's a nice event you're planning with your sis's ashes. And the necklace. Sorry you and hubs aren't getting along. It kind of sounds to me like you get taken for granted in your marriage. But after so long, people grow apart, too, I guess. Any which way, I'm sorry. You deserve to be appreciated and to have happiness in your home.

...

I'm thinking about quitting my MS in applied behavior analysis.

Not permanently quitting, just stopping at the end of this term to evaluate some things, including considering whether another uni's program might be a better fit for my education goals.

I'm about halfway through. It's hard to believe. I started this education journey in late 2020 with just a vague idea that I wanted to go into a "helping" profession, and I've found a whole new world and career.

This should be the worst problem I ever have, really, is considering whether my current education platform is sufficient or whether I need to apply to a more "prestigious" program for my major. (And a place with a practicum would be nice, doubly so if they offer gerontology aspects in any part of their program. There's a specialized behavioral gerontology practicum school in Iceland, but it seems a little unrealistic to move across the globe just for school. The program is in English, though! lol 🙃)

I just wanted to share. I've been under a lot of stress. Life never stops, you know..?

I'm going to doc this week for a 2nd round of antibiotics to hopefully finally kill off a sinus infection I've had for months. I'm going to ask for basic painkillers while I'm there, maybe something like hydrocodone, because antibiotics give me migraines (this has happened before with different ones), and Tylenol is completely worthless for them.

I like it when problems have resolutions. It drives me a little mad when problems just go in circles, and you chase after them, but you're going nowhere. That's how I've felt lately with different things.

It will all even out.

*Also... I would quit school for now so I could go back to working as many shifts as I could because I'm low on funds and not comfortable going into a lot of debt for school. There's high demand for behavior analysts, and salaries are good, but... still. I think I'm going to take a break, save up some funds, apply to some other programs, and see what response I get.

But I'm posting this here as a vent/share because I'M JUST NOT SURE THIS IS THE RIGHT DECISION TO QUIT. I could just plow through as I have been and finish the degree.

I don't know what to do. I have a few weeks to make a decision about whether to register for the next term or not.

Sharyn,

I understand how you feel. I would feel the same way. I know that you don’t want to cause the family any trouble during this period of mourning.

It’s sad that you can’t be there. I’m sorry. They have to do what is best for them and you have to do what’s best for you.

I want to share something that my grandmother said ever since I was a little girl. She said, “Give me flowers when I am living. I want to be able to see, smell and enjoy them.” She truly didn’t care about what happened after she died. I feel the same way as my grandmother did.

My grandfather was an avid gardener and he grew the most beautiful roses for my grandmother. She loved her pretty garden.

Your sister knew that you loved her.

A service is more for the living than it is for the deceased. It’s closure, a day of remembrance and mourning with others, a celebration of their lives, a time to pray, etc. You may not be able to be there in person but have no doubt that you will be there in spirit for her.

Sending many hugs your way, Sharyn. It’s hard to lose siblings. I have lost two of mine. So many memories are in our minds and hearts.

Everyone, I am the only one disappointed because I live in Idaho. My great niece lives in Florida. She loves to travel. May won’t work because she is going to Norway in May. My great niece was close to my sister when she lived in California and under the age of 5. I know what my relationship is/was with my sister and that won’t change whether it’s March or June.

I will be getting a necksce with my sisters ashes in it, I will go up in the Sierra Nevadas where my sis wants some of he ashes spread and put the ashes in my necklace by myself in June. It will be a time between me and my sister. It still hurts being slighted. Life’ is what life is.

I can’t drive in March because of the snow between idsho and going over Donner Pass. We have 17 inches in our yard now which is much more than we have received in the 7; years years we have lived her. I I guess I will suck it up so it’s not about me. My neice, her daughter and my nieces son can go in March and have a family trip. I don’t want to be the problem relative even though I feel slighted.