notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
Follow
Share
Read More Close
34K Comments
Popular Questions
Related Questions
- How do I deal with an emotionally needy mother who wants all of my time and attention?
- I get so angry with my 88-year-old mom sometimes and find myself getting resentful to her and not treating her very good. How can I deal?
- How do I deal with being "cut" from the family?
- My sole mate is sole care taker of both parents. Where do I find help dealing with this?
Start a Discussion
My online narcolepsy group is helping me. I wrote them up a historical context of all of this. I'm sharing it here is case, my story might shed light on someone else's experience.
I have likely given you parts of this already, but here is the whole context in one place as I posted on my support group.
Ok, here is the broader historical context of this.
1. My DNA shows a chance of being a nappier person than 60% of the population which I inherited from my mom who took several naps a day for her entire life which became worse as she got older
2. My professional and personal stress level skyrocketed in 1997 which finally came down in 2005.
3. Early in that period, I put on a good amount of weight which I could not lose despite everything I tried.
4. I was diagnosed with depression in 2002 and with bipolar in 2003. Soon after that, I went on disability and never worked again.
5. I was tested for sleep apnea in the mid-2000s and was diagnosed as such.
6. Somewhere in there I was diagnosed with pre-diabetes which became the actual thing.
7. As time went on, I complained more and more to my psychiatrist about my sleepiness. She tried Nuvigil, and Provigil. For some reason, she started with Ritlin to solve this.
They all failed. Then, she tried an antipsychotic for bipolar depression. It did not work.
8. In 2017 I moved to another city but kept seeing her in person or online. I left her about a year and a half ago to people who kept saying I was depressed and kept throwing one anti-psychotic after another at me which only made my sleepiness worse.
9. In frustration, I reached out to my former psych and she took me back. After trying me on one more anti-psychotic claiming it did not make people sleepy, she stopped in our meeting that day and said, "You are not depressed, you are pissed off. I think you have narcolepsy and must be tested for it.
10. That was October of last year. It took me to January of this year to convince my sleep doctor to have me tested for narcolepsy and diagnosed with it.
So, my conclusion is that things like weight gain, trouble losing weight, the development of diabetes and sleep apnea which are often preceded by weight gain as well as possibly my mental health issues
all somehow or in some way are connected to narcolepsy.
Looking back, I think it has been there or increasing for a long time.
Narcolepsy often develops for some of us later on because of the right combination of DNA and extreme stress in our lives.
I am not a doctor at all. Nor am I trying to play doctor on myself.
However, as one trained in Greek exegesis and the Inductive English Bible Study Method plus being a history minor who loved church history courses in seminary and the son of an engineer plus doing doctoral research, this is my hermeneutic concerning this matter.
Ask any questions that you may have.
Definition:
The person who is reading this.
I hope it’s true!
And in the context of caregiving, I hope it’s true about those elderly LOs who, were kindly taken care of by (usually the daughter), and then viciously abused the daughter who took care of them. It happened to so many of us caregivers here on aging.com.
I suffered bullying all through my school years and as an adult also realized that my own family were bullying me. It wasn't till after caregiving for my mom and the self esteem it brought me that I realized I deserve better. Funny, (NOT), my family doesn't seem to care for the new me. Ah well, boo hoo for them.
Speaking of which. I'm seeing them this weekend. Not looking forward to it. Even though I now know I deserve better I still get really nervous at the thought of being around them. At Christmas I sensed a new kind of hostility from them. Probably the not liking the new me. Again, ah well..................
I love this too.
However, I found that the goodbyes had to remain unsaid, at least out loud to the relevant party. Otherwise they just brought arguments, and more accusations of me being in the wrong and "not quite right" minded.
If you truly want peace, you avoid these confrontations.
I simply distanced myself, slowly or quickly as the situation demanded. Explanations aren't necessary. Responding to "Why" or "Can we bury the hatchet?" is not useful, and, in fact, only prolongs the dysfunction.
Not that there aren't situations with some people where going into the "Goodbye" might be beneficial, but not with the really toxic. We each can judge that difference for ourselves.
My two cents...
Doggie - I'm glad you are waking up to the manipulation and taking steps to protect yourself.
I love that "When you choose peace it comes with a lot of goodbyes".
It's beautiful.
I realize now how much the "love bomb" technique is being employed right now because if he gets what he wants I become "sweetie" or "honey". I had a major meltdown yesterday and tired calling him, just to talk, and he basically told me "don't call me unless you're happy". He stonewalls me unless he wants something. His latest thing is his pillow. I did give him a pillow (off our bed) but it was the "wrong" pillow which wasn't soft enough for his back. It is weird what becomes the straw the breaks the camel's back, but until he went into ICU in Feb I really didn't stop to examine how fragile and broken my mental state is/was. I think a lot of it is my body and brain healing from nearly 15 years of being married and at least ten of them stressed out.
Mark has so many doctors it is unbelievable. He has a PCP (that was over an hour away), an oncologist, a renal doctor, a wound care doctor (not now that the leg is amuptated), and a doctor for gut health. On a typical day to get him to a doctor I would have to help get him from the bed by helping him sit up, helping him slide to the side of the bed. I would help him get on his pants and socks. He would stand for a minute and I would help him get in the chair. To get in the car I would have to help him stand and lift his leg (this was before amputation) and help push him into the car. I would then have to readjust his leg. I then loaded the wheelchair into the back of the car. When we got to the doctor's appointment, I would have to lift his leg back out and help him balance back into the chair. I would repeat what I did to get him into the car. I was having to wrap his leg about two times a day. He could not get in and out of the shower so I was sponge bathing him.
It was a production if he needed to use the bedside toilet because I'd have to help him take off his pants and undies and steady him until he got on the toilet and transfer. I would need to be sure he wiped himself and then help him pull all the clothes back on and get back on the wheelchair. Then, the worse part, emptying the nasty thing. Mark then needed to wheel himself to the sink to wash his hands. Yep, see how complicated it is?
Mark says I am neglecting my vows when I told him is it not safe to leave a bedbound man alone (I would have to work). It would not be feasible to even move him as delicate as his condition is. Mark is angry I am doing a real divorce. I had a mental crisis and tried to talk to Mark and he said he doesn’t want to talk to me unless I am happy.
Good for you! I'm pleased that you have found the way to set yourself free from abusive neediness, manipulation games, and guilt-trips. That is great. Congratulations on graduating from The BurntCaregiver School of Coping. You did good. I stopped doing the doctors' appointments for my mother a while back. I had been responsible for every doctors appointment since I moved back here. I wasn't able to work good hours anymore because I had to be available for two and three (sometimes more) doctors' appointents a week usually. Until I made myself unavailable for any. my mother enjoys socializing with her doctors and their staff. Someone else takes her to those outings now.
Also, congrats on giving your abusive old man the heave-ho ten years ago. No doubt that worked wonders for you in recovering your own self-worth.
People like us have spent years, decades even, on board the guilt train that our abusive parents put us on. I'm always thrilled to hear when one of those guilt trains derails. Good for you.
Well said, Margaret. Sometimes we don't realize how bad it was till we are away from it
nacy - so glad you got out of that abusive marriage and have maintained boundaries and let go of the guilt!!!
I’m not suggesting that you don’t have your own genuine problems, including Aspergers, but perhaps any genuine problems are being made to seem worse (and are being made worse) by the comments you are getting from these guys. Narcissism, blaming and emotional abuse may not be the only things happening here. Think about it, and whether you need to be protecting yourself a bit more.
It was a real jolt for me to realize yesterday how similar Mark and Robert talk and act. Then again, most of the men in Mark's family do. Robert has very little respect for women and says their place is at home. I am beginning to suspect some degree of narcissism exists. I feel like an idiot for not realizing my husband of 14 years, Mark had narcissim, but now reading about it, how could I not have? He loves to stonewall and refuses to contact me unless he wants something. Looking back now, I see Mark used a lot of emotional abuse such as "no one else would put up with you." "I can divorce you." "After all I've done for you, you would treat me like cr*p?" Robert does the same thing holding things over my head on how much he's helped me, how much no one else cares, and what a good caring guy he is compared to everyone else. I am grateful for his help, but I just think it's wrong to keep demanding $$ at every turn for everything. If I ask to go the grocery store (two streets away) he demands $30 bucks. Mark is at the point where he is paying Robert money to bring him things to his rehab center.
Keep venting! It sounds like you need to!
Robert is now gouging Mark for his S.S.D. money taking it because he says Mark can live with him but the room needs to be redone. You see, I still have a month left in my lease (already have a place rented in NM) and Mark will no longer help me with the bills and is giving that money to Robert. My late stepdaughter's boyfriend accuses me of stealing things from them at every turn. Yesterday, he accused me of pouring out a jug of tea they had in the garage and stealing tools from Robert. I do not drink tea, and I don't steal things. Robert wanted to sell one of the I-Pads until I told him that it was for my work (it is) and I have to return it.
No family is perfect. Mine certainly isn't. Sandy, my late sister was addicted to meth and it killed her. My brother has severe OCD and my mother anxiety as well. My aunt has chronic depression. I have no intention of not paying my brother and SIL back for all the help they have given me and my aunt if she will let me. Robert goes on and on about "well, I am here to help family" yet the second the $$ is not rolling in digs into me about it. I tried to get the dealership to come get the truck, but since my name is not on the lease and I don't have POA, they refuse to do anything. The woman at the dealership was nasty and said they'd have to have a letter stating Mark had been in the hospital and was unable to drive even after telling her about the amputation.
Anyway, it's a mess. Mark does have some family here, but they will not help with any caregiving and I am not going to try to convince them otherwise. Thank you for the rant.
"I was a patient there from February 14, 2022-September 11, 2023. I saw intern psychiatrists under supervision who started me on various antipsychotics because of a perceived hypomanic experience. I don’t agree with that, nor does my wife. However, that is beside the point.
My concern is that one anti-psychotic after another was tried to treat a supposed depression problem. They included Latuda, Abilify and Vraylar. All they did was make me even sleepier.
On October 4, 2023, I returned to my former psychiatrist, where I used to live in Goldsboro, NC. After meeting a few times with her, she determined that I was not depressed but that I likely had Narcolepsy. She was quite blunt, saying, "You aren't depressed, you are pissed off, and you need a narcolepsy test."
The Narcolepsy test shows that I do have Narcolepsy 1 with cataplexy. No wonder those anti-psychotic meds that I was given made my Narcolepsy worse. Narcolepsy is all too often misdiagnosed as depression.
I raise this issue from my experience to request that you become aware of this possibility when treating others. The anti-psychotics gave me various side effects, one of which remains, that is, teeth grinding.
My experience there and my life while there were not worth living. I hope that I never have to experience anything like this again. My hopes of completing my PhD are in ashes. Those supervising these young psychiatrists must be more aware of things instead of being so laid-back. Thank you for listening. "
I realize this is written with a powerful, angry tone, and yet polite.
I am now on a search to discover what negative impact taking those antipsychotics had on my brain. My school has given me this year off. My supervisors want me to return because they are excited about my approved dissertation proposal. Yet, I'm not back to where I was. Reading my proposal does not inspire me. At this point, I'm tired of fighting and the drama. My PhD work was my retirement project, but it does not look that way now.
Looking back to the fall of 2002, I wonder if my diagnosis of depression was right and that I was showing symptoms of narcolepsy even then. If that is the case, then my diagnosis in 2002 with bipolar may have been wrong also. It also can be a misdiagnosis in the place of narcolepsy. I do remember from back then how much trouble that I had with staying awake at times.
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.
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.
You have a lot going on. I wish you and your wife all the best.
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.
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.
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.
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.
---------------------------
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?
-------
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.
------------------
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!
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.
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!
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.