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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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The genetic roots of my narcolepsy.

My Ancestry dot com DNA analysis says that my DNA suggests you take naps..
BASED ON YOUR GENETICS, YOU'RE MORE LIKELY TO BE A NAPPER THAN 60% OF THE POPULATION.

My DNA does have something to do with me having narcolepsy.

The DNA results show that this napping comes from my mother. She took many naps a day.

Someone from the Narcolepsy support group commented.

Yes. To develop narcolepsy the usual way, you have to have a genetic predisposition. The gene is HLA-DQB1.

My wife and I have rested a lot today after receiving our RSV and COVID-19 vaccines.
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Need help with mom,

Yes, I do have a lot going on. This new insight about my SIL is a bit unnerving. I consider self-care as self-care, not self-care, to be able to be the caregiver for someone else who, particularly as my SIL has said, has always been the one to get others to take responsibility for her.
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Yoda,

You have a lot going on. I wish you and your wife all the best.
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Gershun,

Thanks,

The latest medical update on my wife and her back problems is that at her appointment on Thursday, she learned that her next step is to send her to a pain management place where they will choose if a shot or a blockage is the best way to proceed.

A retired friend of mine and I discussed my SIL's puzzling comments. Here is what I gained from the conversation.

My primary value to my wife's identical twin sister is that she needs me in this caretaker role to make my wife's life easier. Knowing that she does not have to take care of my wife directly gives her a sense of relief. She has a sense of responsibility for my wife but does not want to be her caretaker. This does not mean that she doesn't really care about me, but as the child of a narcissist, she mainly values people for what they do for her. I don't think she is even aware of this. 

At the same time, my SIL says I must have a life, too, and take care of myself to care for her. She contradicts her concern when she says she doesn't see any path to caring for myself and having a life. I don't either, but this will be discussed with my therapist.

BTW, my SIL is an ovarian cancer survivor since 2021 and has several complications which add challenges to her life.
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Keep speaking your mind Yoda. It's cathartic.

It's not good to bottle it up. I lay awake at night sometimes ruminating about things. I get so wound up that I get panic attacks.
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Sharyn,

So PM no longer works? I sent you what I posted here as a PM first.

I am sorry to hear about the recent and upcoming surgeries. My wife had her knee replaced last spring and is doing much better. Thanks for praying. I will pray for you also.

It has taken me a while to see this, but my primary value to my sister-in-law is that she needs me in this caretaker to make her sister's life easier role. Knowing that she does not have to take care of my wife gives her a sense of relief.

At the same time, she says things like you need to have a life too, you need to take care of yourself, so then you can care for her. She contradicts her concern that I don't see any path to caring for yourself and having a life.

As my friends and sons have noted down through the years, I've made her life easier and to what end. To the end of destroying my health, which put me out of working 20 years before being old enough to retire. I've told my SIL, that I want this truth told whenever I die.

Some of the family farmland was sold, which provided me with a nice chunk plus what I've saved for the last 18 months to invest. I have no plans to die soon. I'm setting up this investment to provide more income in ten years because we might need it, or the dividend retirement financing approach may have a bubble experience as real estate did. I own a third of that family farm, which means I get 1/3 of the annual profit from renting it out to be farmed and 1/3 of whatever all three parties agree to sell and how much to sell it for. So, here at almost 67, with my son who majored in economics plus does very well with his own money and has been right in his past ideas for us advising, I'm gearing up my retirement money for the long haul.

I'm likely a rare bird who, like my dad, has retired with dividends and annuities creating my retirement income, which is higher than I ever made. Even so, I am thankful, but I want to be wise in being a good steward of all of this.

I never made as much money as my dad did, but I do know how he planned for his retirement and how early he began with his plans, although my mom thought he was crazy.

It's an interesting fact check here. Who is crazy?

Is it the person who came from old money with a master's degree who divorced, remarried and played for the rest of her life but was as poor as a pauper with poor family relationships at the end?

Or is it the person who did not come from money, whose dad was the only one of his drunk brothers to graduate from high school, plus was the school's valedictorian along with being picked by Ohio Electricity directly to help spread the use of electricity in Ohio after graduating from high school in the southern Ohio Appalachian former coal mining town of New Straitsville, whom only earned a BS, but when he retired was chief engineer of research and development, not to mention his invention solved Mack Truck's most significant warranty bill on their engines plus ended up doing negotiations all over the world in behalf of Mack Truck who had not only a lot but also better family relationships?

I will continue this in another post. I just need to get this off my chest.
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Also, my mom didn't want me to become like my dad but instead tried to raise me on a pink pillow like a girl, for she never wanted a boy, which she also told me. Plus, she was always talking so toxic about my dad, who never said a mean thing about her, but even when he spoke about how he saw things, it was never in a toxic manner. It threw my stepmom for a loop that he cried when he learned about my mom's death. Sorry, and I might lose some people over this, but I cried at my father's death and each service that was held for him in two states, but not upon my mom's death or funeral service.

Trigger warning: the following is blunt, harsh pain and anger. Be forewarned. If you have to stop reading here, that is ok, I understand,

I wrote a poem about her and in the part about her decline, I wrote,

"I’ll be so glad, when you depart.
This day, this hour, this minute, this second, leave planet earth right now
Either from a heart attack or a stroke, I don’t care how.


Some things are going in the grave with you as you go into eternity.
I do have an identity.
I have a loving wife who still sees something in me.
It’s your loss, for she is not the enemy.

Do you now feel helpless now like I did?
Do you even wish that you were already dead?
I’ve had that idea too fly into my head.
I’m not lying,
I’m glad you are dying

For as you are declining, I’m finally thriving
You are no longer the one totally in control
All you have before you is being put in a six-foot-deep hole.

How I hate your objectification.
Spent years seeking salvation."

I wrote this a few weeks before she died. Before that very painful and dark memories from the years that I had no memory came to mind. A decade earlier, a former therapist told me at our last meeting, one day, you will see what your mom did to you. I hope you can forgive her, but if not, I understand.

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One person told me that it was her loss and mine that I grew up to be like my dad. How invalidating can one be?

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By the way, I have read many recent studies about what I went through. I'm not alone, but too many of us are still quiet. Too many still don't believe us. Ever wonder why the numbers are higher for men unenliving themselves? This is one reason.

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that's all and if I'm removed, I will understand and will move on with my life at almost 67 with so many blessings!
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notrynoyada, I tried respondingjpi an sad aboutyoyr wife’s health issues as well as yours. message you privately but i could not. I am happy you are at least progressing forward.

I had cataract surgery Tuesday this week. Not a big thing. I bought a new mattress and box spring to be delivered after the 16th. I have severe osteoarthritis in my right hip. I have had one cortisone injection that has helped. I will not get a hip replacement unless the surgeon will do a spinal block. It appears there is more than one surgeon that will do it. I will not be put under a general anesthesia because of a family history of severe delusions after opioid use during surgery.

sending prayers for you.
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Hi,

I am sharing an update in light of all of my protesting that resulted in getting a narcolepsy test last month!

From what I've gleaned online, narcolepsy can lead to weight gain, diabetes 1, inhibit academic work and social activities, increase anger, weaken one's short-term memory, lower productivity & motivation, dissociative symptoms, plus the development of a personality with poor-self-assertion.

Some specific foods and drinks worsen this, but the best way to help it is a low-carb, healthy-protein diet.

Various meds such as anti-psychotics, which  I've been on because people thought I was depressed; antiseizure meds like Lamictal, which I take for bipolar. They give anti-psychotics to people with bipolar for depression.

Foods high in omega-3, such as salmon, dark leafy greens, and salmon, are rich in the hypocretin that narcoleptics lack.

One is not born with this, nor is there a cure, and it does not lower one's life expectancy but may be related to developing dementia.

As memories about my mom flashbacked into my head the other day, I found myself very much in touch with my emotions, and instead of crying, I was shouting as if she were in the room.

My wife's health is not doing well.

Earlier, she had an MRI done of her lower back, and the MRI showed that she has a problem with "L5-S1: Grade 1 anterolisthesis, mild disc bulge and severe facet arthrosis result in mild spinal canal narrowing and mild neuroforaminal stenosis, left greater than right. Small facet joint effusions bilaterally." This is causing terrible pain and her meds are not always helping.

I Googled  "L5-S1: Grade 1 anterolisthesis" to discover what it is. She saw a person today where the back surgeon doctor works. She went over this and ran some tests on Donna. She is sending her to a pain management place where they will choose if a shot or a blockage is the best way to go. 

During lunch, I met someone who also has narcolepsy. After listening to my symptom list, she suggested that I see a neurologist because some of my problems sound neurological, and not just narcoleptic.

Thanks for listening!
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Well done Ali! All that hard work paid off.

And well done DoggieMom, you have some great goals there! 🐶

I was in a housecleaning blitz this morning (small goal but still feels good 😁).

Inching slowly towards one important medium term goal 🐌.. then onto the large ones.
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The dysfunction is more one one side, but I digress. I am doing well in my classes, all things considered. I signed up for a full load not knowing how things were going to go, and have so far managed an A and two Bs. This is the last bit of college I am doing unless I am teaching a class lol. I decided to get my librarian certification and it should be nearly finished by this time next year.

My credit score is slowly improving, so hopefully within a couple years while using a limit set credit card ($200 a month) and having bad debts fall off I should reach the nice spot of 650+. I decided to refocus my aspirations on what I want by the time I am 45 (at least) and my focus is smaller, a nice mobile home that I am paying mortgage on and a pink truck with stickers that say dog mom on it.

Let's see, except for about five boxes I have the garage cleaned out of junk which has not happened since I have had a garage (which has been about twelve years).
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Ali - Way to go!!! That’s fantastic news !
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Narcissists manage their anger fine - when there are witnesses.
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Fantastic, Ali!

You’re on your way to achieving your goals.
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Congrats Ali. It's nice to hear some happy news and I am glad your hard work was recognized and appreciated.
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Oh, Ali!!!!
BRILLIANT!!!!!!!

I have to be honest here. I know what hard academic work is, and I know the pride. I am embarrassed to say I have kept my English 1A term paper that got me 1,000 out of 1,000 points with notes I should consider writing professionally FOR ALL THESE YEARS. I have it to this day. For years I forced it onto EVERYONE in the family. I mean that is one YELLOW looking document now, and done in the days when you sat hours in that library with note cards. No computers. Typed up on a Smith Corona, but it WAS electric.

I remain to this day enormously proud of my work.
You will as well.
This is incredibly validating.
CELEBRATE. You will have years in which to enjoy and remember this.
Make EVERYONE read it!
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Ali, Congratulations !!
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Ali, you should be SO proud of your accomplishment!
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Good job Ali!
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Ali - that's amazing!!! I'd give you ten likes if I could. Maybe this will help you start believing how very special you are. Congratulations on an exemplary job. I have to say I am not surprised. You have shown excellent ability all along in your studies. However, 100% from a tough prof is quite an achievement.

An academic journey is full of unknowns. That's the nature of it.

Wow - time to celebrate!!!🎈🎉💃
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I just got my grade back on my project, and my professor (who was the strictest and, to me it seemed, most knowledgeable of all my professors so far)...

Anyway. Lord have mercy. She did not take a single point off for my final project.

Not a single one.

I got 100%.

That is so incredibly validating for me. I chose the most difficult topic (not purposefully), researched it, worked very hard, wrote the paper, and gave a video presentation of my "research" and statistical/graph analyses, and I got 100%.

I'm just so thrilled. It's so validating and makes me feel like I know what I'm doing... I have often felt like this academic journey is so unknown, and while I have a game plan, my stress levels sometimes make me doubt.

She wrote in all caps that it was EXCELLENT WORK. 😁
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Ali - interesting about the AC training. I expect your paper and project are good. If I have it right, AC therapy is based on acceptance of reality which I have always thought was the way to go. I am not surprised you are comforted by learning more about C-PTSD and having your feelings validated. Your world makes more sense now.

"There's no way in heck I'm getting involved in any more decisions my family makes about my dad's care. I will compile some resources and provide them to Mom, Dad, and Bro, but that's it." Awesome!!!! Good boundaries!!!

"I need to focus on my own healing OUT OF and AWAY FROM my caregiving experiences," Yesss!!!!

Re a better relationship with your mother - my parallel experience is with my sister. it took me a long time to accept the reality that she is toxic to me. I knew mother was, no problem, but sis was more subtle in some of her abuse.

Yes, keep on your path. I do find that distance helps - not just emotional distance but physical also. I would never have moved to this area when mother was alive. Her expectations of and demands on me would have increased.

Glad you have some peace about your mother's decision to be caregiver for your dad. If it becomes too much for her, then she will have to figure that out. She doesn't need to be rescued.

Anxietynacy - yes, because the one with knowledge will upset the family dynamics/fantasy whereas the golden child in denial goes along with it. BTDT. They don't want to face the realities.

sharyn (((((hugs))))) it's great that you are moving forward and putting up strong boundaries. Good for you for joining a painting class and going on a trip to California with your kids and grands. Both are very good moves towards building a good life for yourself. I'm glad you have a plan for scattering your sister's ashes and sorry that your niece made the decision that she did. You are gaining in strength through all of these experiences and, I guess, that's the best any of us can do. Keep in touch!

need - well said!
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Anxietynacy,

Denial is a huge problem. Sadly, the situation that you describe is far too common.

Ali,

Glad things are moving forward.

Sharyn,

Grief takes time to process. Your painting class sounds fun.
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I talked to my mom tonight and finally got the piece of information that made this situation--where she brings my dad into her home to care for him--make sense.

She will be getting paid for caregiving through the VA, and she's continued to take my dad's little bit of extra income for the past 6 years and doesn't want to give that up.

I have no issues with her being paid; she SHOULD be paid. And if my mom wants to do this and my dad's ok with it, I'm totally fine with it.

I don't understand why in the many previous talks we've had about my dad's care, she never just came out and said, "I need to do this for money for my own security." Instead, discussions about my dad's care were always as if there weren't other options, so she had to do the caregiving. And she often remarked about how much work it was and how much care he needed. And she's said she feels she's supposed to care for my dad; it's her duty. That's mystical thinking, and I can't wrap my mind around that kind of religious/new-age reasoning. Sigh. I've wanted to protect her from taking on more than she can handle, as she has done in the past, at her own expense.

But finally, I learned tonight that she wants the money. Fine. Now it all makes more sense, and I'm relieved. It's not my mom being overly enabling/enmeshing as she has done in the past; she needs the money and will be paid! Well, ok then! Why didn't she just SAY THAT? 😄

Hi, Sharyn. Your sister's death is a big loss, and also, the not-good home life with DH has to be hard. I'm sorry you're going through these things. I'm glad you have some things to look forward to, like the painting class and the trip in June. 💙
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Hey everyone, while I still have dark sad times losing my sister, I’m moving forward and not allowing myself to be a doormat in ways where I come across as an a$$. I’m putting up string boundaries where I need them in my life so I can be a strong happy person again. It is hard not going to lie since I have to continue to live with the main person involved. I can’t afford a divorce or to live on my own but I don’t have to be beholden to someone who doesn’t value me.

I have a painting class next month I’m looking forward to and I will be going to California in June with my daughter and grandsons plus my son and sil will join us. We will pay our respects to my parents sister and brother. I won’t be going to the graveside service for my sister next month. I’m very sad and hurt by this decision by my niece but, … not worth starting a family feud over it. I will spread some of my sisters ashes where she wants them spread with my family. So all is good.

im rambling so I’m going to sign off. Sending all prayers and love.

sharyn
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I'm curious, if anyone has noticed, in these dysfunctional family's, that it seems like the one that is Medically knowledgeable, or even just doesn't live in a state of denial, about the physical and mental decline of a loved one, that they are pushed away by parent, and the golden child is the one that lives in denial and has no clue about anything. Just wondering?
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Hugs back to you, Ali.

Your class sounds interesting. Human behavior is fascinating and family dynamics are extremely challenging to cope with at times.

You have self awareness and that is going to take you far. It’s the people who don’t recognize themselves that run into the most difficulty.

You also have a clear picture of your family’s behavior. You aren’t in denial. So, I have confidence that you will figure out what is best for you.
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I've had four very demanding long days of schoolwork. I've often been distracted by thinking about my family history, how their individual patterns of behaviors affect me, and the living hell I experienced during caregiving. I've been spending time relaxing at night by watching dozens of discussions/presentations about C-PTSD. Strangely, it's very relaxing and comforting to me to learn more about it and gain knowledge and validation for everything I've felt and am feeling.

I'm still not done with school just yet, as there's one small extra credit assignment I'll turn in tomorrow because I have no clue how well I did on my research project and may need the extra points. I unintentionally selected the most difficult topic from the three scenario options, but at least it was an intriguing topic. I wrote a fake study on the effects of Acceptance and Commitment Training (not "therapy," hee hee, I'm calling it by its ABA name, as ACT is rooted in stimulus equivalence and relational frame theory, and those concepts/theories are behavior analytic). Drawing conclusions from a single-subject research design (multiple-baseline across subjects) for something as complex as ACT's effect on individuals is FAR outside my scope of learning, but I read a lot of research articles to support my project and tried my best. I'll see how the paper and project go over with the professor.

I mentioning this stuff in case anyone's curious to know more about what I'm studying in school. Most behavior analysis protocols/methods are more direct in their representation of behavior principles, but examining ACT through a behavior-analytic lens was very cool. Modifying verbally sophisticated behaviors based on clarification (improved stimulus discrimination) of values and addressing experiential avoidance (reducing the motivation to escape from demands) is pretty rad.

Back to the fam and the C-PTSD: There's no way in heck I'm getting involved in any more decisions my family makes about my dad's care. I will compile some resources and provide them to Mom, Dad, and Bro, but that's it.

I need to focus on my own healing OUT OF and AWAY FROM my caregiving experiences, not willingly going back towards something that broke me. It broke my health, my spirit, and my heart. Don't ever choose to go back to things that you ran from! lol That's very unwise. Good call, Golden. And the "selfish" accusation, and many other accusations and labels my family puts on me... well, it is what it is.

It's funny-not funny how easy it was for me to imagine a better relationship with my mom after the past year and a few long talks, and then how easily she got me back on the treadmill to nowhere, seeking her approval, after our conversation a few days ago. I have a better understanding of her after those other talks, but that doesn't lessen my pain when she sneak-attacks accusations into conversations. This is a pattern for her; she's done it all my life. She's not a safe person for me, now or ever. I knew that, but now I confirm it again with myself, and again as often as I need to, to keep a healthy distance and minimize harm.

Many users of this forum are good examples of how to create the life you need for yourselves, away from being involved with dysfunctional family situations. It's crossed my mind that being a few hour's drive away may not be far enough. lol I was already planning to look into other schools in different areas while on break from classes. Maybe a move would be good for me. It's a decision for another day, but I can see how putting myself squarely on my own self-determined path will boost my clarity and confidence, and keep nailing down the coffin lid on the destruction from caregiving days. I'm not resurrecting *any* of that.

I've had a lot on my mind. Big (((((hugs))))) to all, and thanks for sharing your hard-learned wisdom over the years.
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Way - definitely not easy at all. My father was not blind but was helpless. For all the vicissitudes of old age, I wouldn't go back for anything. I have worked hard to get past the family dysfunction to a place of relative peace. Unfortunately some of this mental illness continues in other family members, but I have learned over the years who I am and to how better to deal with it. It's taken a lot of hard work!!!!

Just saw your add on about narcissism. I agree entirely with what you wrote. Mother was finally diagnosed with BPD at age 95 when signs of dementia started. She would never have gone for a diagnosis or treatment earlier and always rejected any suggestion that she had a problem. I think we see parental personality disorders and other mental illnesses in higher proportion here than the general population as we as caregivers have been and are severely challenged in our relationships with them. This is not "normal" self-centeredness.
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Golden ,

Decent lives is a good word for it .
It’s not always been easy .

My father was loving in his own way but also blind to my mother’s afflictions until he was much older .
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