The Caregiver & Dysfunctional Families: How are you doing?

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.

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 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.

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..

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))))))

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.

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. 💖

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.

FB, you say you and another person are "trying to help". You seem to think that there is binary choice between being in thrall to your dad and walking away.

How about figuring out what you can and are willing to do? Like, taking him dinner once a week and taking him to one doc appointment a month?

Anything else requested gets the response "I can't do that. You'll have to make other arrangements."

Your dad is ONLY at home because he made an arrangement with a friend to stay with him. His stubborn and abusive behavior ran that person off. Discharge assessed as needing full time care. You cannot and should not be his full-time career, because you have to work and because he's abusive.

His needs do not trump yours.

@BarbBrooklyn,
His issue is going to be that he might be burning his bridges with people who actually wanted to help him. I told the physical therapist and the discharge people that I would not be moving with him or him with me. He knew this as well but I think he thought I would be forced into it but I will not be. After all that has occurred, he still does not treat me right. He purposely will not wear his pull ups. He says he does not want to wear them. Instead he just uses the bathroom on himself sometimes because he says he does not feel like getting up. I'm the one who has been washing his clothes and it is very unpleasant.

Got a funny one for you regarding psychologists, shrinking in general, and the labels we have for everything and everyONE, along with a pill to pop for current circumstances.

DD decides to see a psychologist. Cognitive therapist. Just "dealing with stuff", you know? Cutting the natal cord with son moving toward 25, ; Mom (me) with new cancer thingy going, issues at home, difficulty with physical issues making her tough work with little ones in school more difficult by the day to say nothing of the current school systems and how they work. Issues like whether best to retire early now at 62 or try to keep on keeping on.
And other stuff. You know. LIFE stuff. Kind of a check in check up and what might help with working through some of this.

So she goes to first appointment.
And comes away with what?
This woman (cognitive therapist) says that my entire family is autistic.

She says that in response to this she herself laughed and said "Really" and didn't know quite else what she should say (I would have said "you're a WONDER! Diagnosing about six other people without ever seeing them once).
And the woman sat back and said "Oh! You think I am kidding!?! Then you should read the book "Unpacking Autism".
I laughed so hard. I told her she should have said "well on top of THAT diagnosis my Mom also has an anxiety disorder and is a bit OCD, but not much I can do about THAT". HEEEEE!

Oh my god. Talk about reasons just to try to get on with it, and stop expecting happy-all-the-time. She is kind of trying now to decide between just not going back to this shrink, and continuing to "shop around", or going back kind of for the fun of it.

I myself think about "seeing someone" just for this particular round of "a spot of bother" but then think and think of the three times I had therapy (not that each didn't help and didn't contribute) and think I know all the tricks and could likely DO the therapists role, so why bother. Whether is is depression or anxiety or uncertainty of any things else I no longer think that the pills that are so common in our society are improving us much, or that the deep breathing does much more than just improve our O2 sat.
Guess I am just getting old and figure "Bad weather front incoming. Batten down the hatches" and get through the current storm, hope for sunnier weather on the other side.

Alva, good Lord! WTF?

FB, why on earth are you doing your father's laundry?

Have you ever heard of "natural consequences"? Let them occur.

FB, have we ever told you what NeedsHelpWithMom's therapist told her? Need said "oh, I have to keep up all this caregiving. Otherwise my mother will be upset."

The therapist said "So? So what? She gets upset. That's not YOUR problem."

FB, your dad not wearing pullups is not YOUR problem. Stop "owning" his bad decisions.

I've been to therapists. When I was a teenager my home life was a fright due to my brother who was schizophrenic and violent and then my school life not much better where I was getting bullied. I became anorexic and mom thought talking to someone would help. The first time I went the doc asked me why I thought I was feeling bad and what was triggering stuff. I have always had pretty good insight and when I got through explaining he said "wow, who told you all that?" I said "Nobody, I just know this"

I guess the point I'm making is anytime I've pursued cognitive therapy etc. I'm not really learning anything new about myself cause I already know it. In other words "know thyself" isn't helping with anxiety/depression.

Ali, you make good points. I did start going to meditation classes two weeks ago. The first time I actually did get into a meditative state. I was sceptical going in but I told myself to be open minded about it and voila! The second week wasn't as great but I'm going to try to stick to it.

I am trying to feel God's love inside of me to. I have been struggling with self-hatred lately a lot. But I do believe in God. Very strongly. I know he doesn't want me to feel this way. So, I do try to go to that God place when I meditate.

Gershun,

It is amazing that you had such insight at such a young age. I certainly didn’t have the insight that you did.

I needed therapy in order to gain an objective perspective on my situation.

Due to various reasons, I had so many confusing thoughts when I was growing up. I wasn’t able to sort out my feelings very easily.

Therapy helped me to understand myself and others. I had a phenomenal therapist who pointed out things to me that I wasn’t able to understand at the time.

I am glad that you are benefiting from meditation.

It is important find time to spend alone without any outside distractions .

Alva,

Wow! Unreal, huh? “Unpacking Autism.” Now, that is a stretch!!!

Alva, I can't believe the nerve of a cognitive psych to give a client's family a diagnosis of ASD, sight unseen, and during the first session! That is bananas. That psych is a mystic seer, for sure! 😄

The psych is practicing very far outside their scope of competence. Funny as heck! Also, UNETHICAL. I'd say that anyone capable of giving that kind of blanket advice in a first-session-bomb-drop isn't going to be very helpful in sorting out DD's nuanced struggles.

I've come to suspect some ASD in my family, and the three I suspect are all unable to live in the world without degrees of help from others, and that's always been true. There are clear lifelong issues and differences in their capabilities, beginning in early childhood. Even then, I wonder if they would ever be officially dx'd ASD even if they did seek out the right team of specialists to assess them. But the numbers of ASD are rising, as much as 1:44 by some estimates.

Gersh, keep stepping. Keep it up, whatever it is that gives you a healthy brain boost. Meditation is difficult (for me), but like anything else, it gets easier with practice. 💙

FB,

I feel your pain.

Oh my word, I gave until it hurt and trust me, I deeply regret it.

I was blind as a bat. I had so much empathy for my mother that I placed myself last for far too long.

I bought into all of the lies that people told me. Others told me that I would regret it if I didn’t care for my mother myself.

I landed in therapy because I was severely depressed and anxiety ridden. I am grateful that I had a therapist who helped me sort out my emotions.

Barb is correct in saying that I was fearful of my mother’s reactions.
Honestly, I think I was crippled by my fear.

I felt responsible for everything and I couldn’t bear to look at what would happen if I wasn’t there to help.

I also became very complacent. I was a shell of the person who I once was.

I was going through the same motions day after day, and absolutely miserable. This isn’t living life. It’s not even helping our family member to the best of our ability.

When they need more help than we can give, it’s time to let go of the responsibility and reach out for help.

I’m pulling for you. It isn’t easy to admit that things must change. When you do, it is a huge relief!

Please don’t remain in your current situation. It will only become worse.

@ BarbBrooklyn,
You are so right!!!!!

gershun ((((((hugs))))) and prayers I never went for cognitive therapy so have no idea if it would have worked for me. There are other types of therapy. God so wants you healed.

FB - boundaries, boundaries, boundaries!!! Let him deal with his own sh#t in every sense! Limit contact and only do what is comfortable for you.

I once went to a psychologist who after one session pronounced that I did everything for my kids like their laundry. Can't remember what else. She was so off the mark. My kids had chores. As soon as they were tall enough to manage the dials they did their own laundry. They did kitchen duty and so on. I considered it a waste of money and never went back. Alva, I am surprised that your dd is considering going back.

Ali I have found it helps to figure my family out .Both in terms of relating to them and in figuring myself out.

FB, stop today. Repeat after me "Dad. I am not your laundry maid".
Practice. Look him in the eye. Say it.

I had TWO family members that refused to wear pullups when they started to need them.

No adaquate clothing - no rides in my car. My car is not your toilet.

Don't anyone tell me Oh you'll be proud one day too.. No. When incontinent after childbirth I wore the biggest sized pads to be found - I called them surf boards! When UTIs strike, I head straight to the incontinence isle in my local supermarket. I have worn elastic waisted clothing for speed for years!!

Dad needs to wash his own clothes & then HE can decide whether to save himself some work. Or not.

I would guess his size, buy the pullups, leave them in his bedroom. And never discuss again.

Ok. Rant over.

Fairhfullbeauty,

Don’t do Dad’s laundry , cooking , cleaning , shopping etc .

Do NOTHING for him . You are propping him up . He burns his bridges, not your problem . Step back . When he’s in bad enough shape call APS.

@NeedHelpWithMom,

Our situations definately sound similar. I do feel like a shell of a person lately. I do not understand why a parent would want their child or children to put their lives on hold for them. I have lived in fear of my father since I was child and that is what has caused me to believe I was supposed to do whatever he said. I'm also in counseling but this is hard. Whenever I take up for myself with him, it starts an argument and he accuses me of mistreating him. I know things must change before I end up sick. I had an anxiety attack recently after an argument with him. We do often feel as if we are responsible for them. I think this is because of the way we were treated. He needs more help than I can give. I'm rooting for you too! :)

Need, Ali & Golden thank-you.

You know I always thought my mom's happiness was my responsibility from the age of 4 and onward. You see my dad died when I was 4 and for whatever reason I always felt it was my fault. He died of cancer by the way so where I got that idea God only knows. So I made it my purpose in life to do whatever I could to make mom happy. Keeping in mind nobody is happy all of the time. But when she wasn't happy I knocked myself out trying to figure out how to make her so.

No offense to her, but I think she enabled this. I don't fault her for it but she probably should have let me grow in my own direction away from her. I remember being by her bedside her last week of life saying to my sister "I helped mom get through my brother's death.......who is going to help me get through hers"

I think now almost 9 years after her death I've realized that she was my purpose for living. Maybe that's why I'm experiencing depression and anxiety. My mind isn't letting me block out the feelings anymore. They are all rushing in.

The anxiety I have been experiencing has been debilitating. I feel frozen in fear sometimes. But I hold on to my faith and it sustains me. Perhaps once I let go and remember God is in control I'll do better. I hope so.

FB,

My caregiver days have ended. Mom died in 2021. I cared for her for over a decade so trust me I know that this is very difficult.

I hope you will be able to sort this out with your dad soon before it completely destroys your life.

Gershun,

Anxiety and depression are horrible to deal with. Wishing you peace. Please know that your mom would want you to be at peace.

I am happy that your faith brings you comfort.

Sometimes I catch a glimpse of the little black dog that started following me so many years ago.

Sometimes the sun is shining bright, I am happy, busy, heading forwards. I don't look behind me in my shadow. I forget.. but he lurks.

Sometimes it is gloomy. I slow down, lose my path for a while. Feel the close presence. Yes little dog, I know you are there.

Every now & then I have to stop & rest. Lay down. Accept the company of the little dog. By staying still some small cracks start to heal. When ready, up I go, changed.

Like an old broken but glued together vase. A bit messy looking, but the glue is even stronger.

These are my crazy thoughts.
Maybe I'd rather that little dog I know well, then something worse.
😜🏺🐾

Nice one Beatty!

Gershen,

Hi! Here's my update.

I've been having balance problems and falling for some time now. My sleep has been around 5 hours a night according to my smart watch if it is trustworthy, My good news is that I have lost weight. I'm down now to 232.

When visiting where her identical twin sister lives last week to celebrate their birthday, I noticed that I slept better. I mentioned this to my primary care doctor and she said that I am psychologically stressed by all of the clutter in our house plus please tell my wife to get this clutter out.

I would say that 98% of it is hers. I have to turn sideways to walk down the hall because my stance and hips plus shoulders are wider than hers. The den, living area and dining area are all cluttered. Plus, her spending on eBay and Temu has been over $4,000 for the last month.

As I told my primary care doctor, Her twin's duplex is not cluttered and she replied, so up there is less stressful. Yes! Her eBay credit card has my name on it as an authorized user and Experian informed me that her using 47% of her allowed amount on the credit card has hurt my credit scorer. When I got downstairs from the man cave, I calmly told her that her eBay credit card was hurting my credit report and I wanted off of it. She agreed. I made the phone call and they asked her to confirm everything.

On our way home on Sunday my wife expressed interest in our moving into the empty duplex right next to my wife's twin. I said that I did not see a need for it right now, but it was something to think about.

My sister-in-law had a lengthy, heart-to-heart discussion on the phone as we often do before I visit, little times during a visit and after a visit. I liked her reflection about all of us getting older with various health challenges. She said that she could not deal with us moving right now because it had not even been a year since her husband died.

Her further thiking about all of us aging and our health challenges led her to ask me to research retirement places in our state that over three levels of retirement. 1. Independent Living. 2. Assisted Living. 3. Nursing home care. That is a great idea. I've reseatched this already minus places in the mountains and on the coast. I sent the names of the cities where they are and the links to each one of them.

Today, our youngest son reminded my that my wife does have mild cognitive impairment and most likely should not be involved in the research process because it would be too confusing. He suggested that my sister-in-law and I dig deeper into this, find about three that we like, and tell my wife all about this plus why we picked these three places. Then, we will ask her for input on which one to chose. Our youngest son will help with the research a bit more behind the scenes and I'm going to send him the same list that I sent my sister-in-law.

I guess that you can tell that my sister-in-law and I are more like siblings since having known her for over 36 years plus the ordeals that I have helped her work through like her battle with cancer, her retirement, plus almost making some bad financial decisions while preparing to retire. I'm sorry to have to say this but her husband, for various reasons, was such that she was more of a caregiver for him all of these years.

I saw my PT for him to evaluate my balance and he created a program for me to use various videos from his office connected to my smartphone and do them twice a day for 15 minutes. It's time for my second 15 minutes of the day.

Like me, she is concerned about her sister's huge obesity and how slack she is taking this whole weight loss thing.

Another good news to report is that my diabetes continues to stay well under control.

In light of our health issues and her sister saying that she does not like travelling over the holidays, we have cancelled our Christmas week trip. I am particularly not up to travelling with this sleep problem and frankly, I'm living from one day to the next.

I care for my 72 yr old father with vascular dementia. It's hard to whine or complain when I can only imagine how lost and confused he is ! Unfortunately he had a fall and is currently in the hospital. My dysfunctional siblings are "encouraging " me to be at the hospital 24/7 just as I was at home. But I'm taking the time for myself to actually rest and take advantage of the respite of his absence. Does this make me a terrible person?

FB - it takes two to argue. If you don't take his bait there is no argument. You don't have to defend yourself, or justify your actions or decisions to anyone. Set your boundaries. He won't like them That's ok. They don't have to be discussed. Let him talk and when you have had enough just leave or hang up. Another response is "I can see you are upset, Dad. I'm going to go now and I'll see you (or talk to you) later when you are feeling better.

Gershun ((((hugs))) That must have been very hard on your family for your dad to die so young. Apparently kids do think it is their fault and take on too much responsibility. As you know now you are not responsible for anyone else's happiness.Just your own. You became the family "helper".at cost to yourself. Yes, your mother probably did hang onto you too much. All parents are fallible. I think it may be a good thing that the feelings are finally coming out, if you can work your way through them. I have found that talk therapy with a supportive counselor helps me. I am glad you are sharing with us. Some things take a long time to surface. Praying for you to heal from all the negative/toxic family BTW I have found that Oil of Oregano (not oregano oil) capsules are sedating. Sometimes that helps. I can only take one a day or I sleep too much. Apparently they oil of oregano may increase dopamine and serotonin.

Nice analogue, Beatty - better the devil you know...

yoda - sensible to be looking into facilities especially with your wife's MCI.

shelly - welcome - not a terrible person at all, but a wise one. As a caregiver you have to put on your oxygen first, so to speak. Don't let your sibs pressure you into more than you can handle. it sounds bad enough that you don't have a life. Can you take some time for yourself in your daily routine? I'm sorry you gave up your job to look after your dad. Who will look after you when you get older?