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I’ve been noticing that I have developed a fear of doctors and medical offices when it comes to taking care of my own health.



I guess sitting in an office with the doctor who was giving the results of my husband’s dire diagnosis was not helpful. He was yelling at us that we needed to leave town immediately for Seattle to start treatment because it was that bad!



From there it was all the late night emergencies where I had to drive my husband in the middle of the night to the ER in a strange city and in the middle of Covid. I almost wasn’t allowed to be with him in the ER. Then getting lost in the big city trying to drive back to our apartment alone because my husband had to be admitted. It was stressful.



Then it was waiting on all the results of the bone marrow biopsies- so far 8 or 9. Also waiting for all the blood test results every week to see what all the cells were doing.



It does a number on your head. I’m beginning to fear that my own health may not be good. I have to go in and get checked out but it’s creating quite a bit of anxiety.



I know I need some counseling and I have had plenty before.



Anyway it’s another issue that just complicates everything.

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I’m not sure what diagnosis one would get for it, but I feel traumatized every time I visit my mother at her Memory Care.

The MC is lovely, but my mother’s negative outlook/depression/confusion/anxiety/bizarre questions/non-acceptance of logical answers, and on and on, feels like getting hit with an emotional 2x4. Every time I visit. It’s so very, very stressful.
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Caregiverstress Jun 2022
I understand. I had a friend that just couldn't do it anymore. She started going once every 2 weeks or so to check on her and make sure she was being cared for but other than that she had to mostly walk away. It's a terrible situation and often becomes a choice between their life or yours.
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Yes.   Several years ago after my sister died of metastatic breast cancer, I did a bit of research on how stress affected caregivers.    The results were very interesting, and somewhat unsettling, and unfortunately no longer available at the original sites.

Those who had provided caregiving had IL-6 levels significantly higher for individuals of the same age who hadn't cared for someone.

This addresses the new nomenclature:

"PTSD and DSM-5
In 2013, the American Psychiatric Association revised the PTSD diagnostic criteria in the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5; 1). PTSD is included in a new category in DSM-5, Trauma- and Stressor-Related Disorders. All of the conditions included in this classification require exposure to a traumatic or stressful event as a diagnostic criterion."

https://www.ptsd.va.gov/professional/treat/essentials/dsm5_ptsd.asp

I have also read that it's referred to not as PTSD but PTSS (Post Traumatic Stress Syndrome), which makes sense b/c it seems to function more as a syndrome than a disorder.  I would argue that this kind of experience, just like that in wartime, isn't a syndrome; it's more of a body's response to conditions for which we never really acclimated.   I yield, however, to those with medical and/or psychiatric experience.
  
One of the very interesting aspects of the earlier literature was the comparison of IL-6 in noncaregiving individuals to those who had cared for someone for  a significant length of time.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC166443/

" Caregivers' average rate of increase in IL-6 was about four times as large as that of noncaregivers." and

"These data provide evidence of a key mechanism through which chronic stressors may accelerate risk of a host of age-related diseases by prematurely aging the immune response."  (kind of scary, isn't it?)

and

"A growing body of evidence has implicated caregiving as a risk factor for health. Compared with noncaregivers, men and women who provide care to a spouse with a stroke or dementia report more infectious illness episodes (1), they have poorer immune responses to influenza virus and pneumococcal pneumonia vaccines (2–4), their wounds heal more slowly (5), they are at greater risk for developing mild hypertension (6, 7), and they may be at greater risk for coronary heart disease (8). Moreover, a prospective longitudinal study found that the relative risk for all-cause mortality among strained caregivers was 63% higher than noncaregiving controls (9)."  (Numbers in parentheses refer to citations in the article.

This addresses only spousal caring for those with stroke or dementia; there are obviously a lot of other caregiving situations besides these two.

Not good; we caregivers have to take extra special care of ourselves.
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poodledoodle Jun 2022
I agree with all your research.

Also this:
“we caregivers have to take extra special care of ourselves.”

I’ll add:
In fact the less you care, the “better off” you are: financially, emotionally, physically.

The more heartless you are, the better you’ll do in this world. Stepping on others, getting richer; selfishly just thinking about your own life.

But:
We’ll all prove them wrong. As someone else posted: let’s show them it’s not a disadvantage to be kind: let’s “win” against the jerks of the world.
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PTSD can indeed be induced by a wide variety of situations. Do not pay attention to anyone telling you that "People don't become a psychiatrist by navigating the Internet or by reading the DSM-5." which is rude & uncalled for, not to mention an absolute diagnosis by someone on the internet who's unqualified to make such a diagnosis.

When I met my biological family in 2000, I was diagnosed with PTSD afterward. And I hadn't even met them in person yet, just over the phone! Paxil helped me tremendously, by the way.

PTSD can come about from a wide variety of situations, including an anxiety provoking caregiving situation that's gone on for a long period of time! I have a good friend who's suffering from this exact situation and medicated for it by her PCP.

There is also something called CPTSD or Chronic PTSD which you should Google and read about; it's associated with chronic, ongoing trauma vs a single event that leads to PTSD.

Definitely see your doctor to talk about this situation in further detail.

Best of luck!
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Lynn64 Jun 2022
Thanks for your support I appreciate it. I wouldn’t mind doing the antidepressants but I have tried to go on them and just had too many side effects plus I didn’t like having all my emotions be flat lined but I can see your point. Therapy hasn’t really helped me very much.

I am extremely sensitive- actually I’ve been called an Empath. I think the stuff I’ve been through with my husband- it really has affected me.

I’ve been taking something called Rescue Remedy and something called Calm by Highland and they have worked wonders and they have kept me from freaking out.It’s all homeopathic. Plus I’m heavily into qigong practice - been taking many workshops and working with a qigong master. Also doing something called EFT. Everything has helped to a certain degree but it’s been nice to get the support of all of you. That has really helped too so thank you!
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The book I am currently reading, a good one about a woman, now in 40s, quite brilliant, who begins to be distressed and ends with ab out a dozen different diagnoses is a good one. Often doctors throw out a word, closely followed by a vial of pills, and when that doesn't work another word, maybe several more, until one can look like a walking DSM 5. And a walking pill popper. I really recommend "Pathological, the True Story of Six Misdiagnoses.
I think the important thing is to avoid labels, perhaps. PTSD is something we can recognize in ourselves after trauma. The tendency to be triggered. The label is unimportant.
Caregivers suffer many things, anxiety, worry, hopelessness, guilt, desperation. And there is an after effect to this as well. Arguing words and labels doesn't help....the person is looking for relief, even for understanding and companionship by those who understand what they are experiencing.
Whatever we call it, we who have given care to others understand it exists, acknowledge it, and attempt to do the work to get through it, even to learn from it. Lynn,I sure do wish you good luck. I think you'll be fine. Along with the trauma you have learned a lot. The coin has two sides.
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Annie65 Jun 2022
Beautifully put - one if the best responses I have read on this forum. Thanks and prayers of strength and courage to all who suffer from stress of care giving - no matter what we call it -a very hard and exhausting job.
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How did the original post turn into a stage for trashing psychiatry? That’s not helping the original poster.

Psychiatrists are medical doctors (DOs and MDs) who spent years in medical schools, internships, and residencies to be eligible to take medical and board exams to practice. Lots of brain power and resilience are required to become a psychiatrist. It is ok to believe psychiatry is not helpful to you, but trashing the whole profession only shows your lack of understanding of the world around you and reveal your ignorance to the world.

To the original poster: any doctor that yells at you is unprofessional and should be reported. And then find a new one. I have changed my doctors for less egregious behaviors.
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antie9 Jun 2022
I was a caregiver to my husband for many years. If I hadn't had a therapist to support me I would have had a breakdown. You can only speak to family so much without creating problems. You need a person who is there only for you. Take care of yourself! no one else will
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I have C-PTSD from years of almost daily emergencies. My son has mental health issues and both parents had cancer, plus mom has mental health issues. I never have a relaxing day. Sunday morning, right now, my son is harassing me because someone has his "things" and he's going to "kill everyone if he doesn't get his things." It never ends. I'm literally phone phobic now over it all. I'm working on it, but it's not easy. The book "Boundaries" has helped me to create my own safe zone. Even if they don't respect my boundaries, I'm much more able to say what they're going through is not my problem, call 911 if it's an emergency, etc...
You need to prioritize your own health and seek help for your husband's care wherever you can. If that means sending him to hospital by ambulance or patient transfer instead of being present yourself, then do it and don't feel guilty.
I wish you well.
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You sound like you've developed a sort of 'phobia' about doctor visits, etc. You are weary of 'bad news' and the demands that may come with it. And you may wonder that if you are found to have a bad diagnosis who will look after you, as well as follow up with your responsibilities. All reasonable. When you go in for your checkup, let all the providers know you are dealing with your husband's illness and have high anxiety now yourself; they will factor this into your care. If you simply worry you could lower your immunity which is a setup for illness in yourself. You need to tap all possible support systems for yourself, even to the point of taking a trusted friend or relative to your own appointment, to help you manage your fears/anxiety. You have been on 'red alert' awhile so your nervous system is easily triggered; look into holistic and standard methods for dealing with anxiety so it doesn't get the better of you. And don't let anyone minimize your feelings because they are your body telling you that You need support too, to face the challenges in your life.
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Michele, I get what you are saying but one thing you cannot overlook is the fact that everybody has different sensitivities. You know how some people faint at the sight of blood. Others could see a blood bath and not feel a thing.

So yes, people in war situations have experienced unimaginable horror. PTSD? No kidding. But caregivers are in another kind of trench. It may not be the immediate soul wrenching horror of stuffing your buddies intestines back into his body but it's still a mind numbing continuous day to day erosion of your spirit when you have to deal day after day after day with one small emergency after another after another.

Yes, it's PTSD. Don't kid yourself.
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MicheleDL Jun 2022
Yes, I surely agree. Some folks have different levels of sensitivity. Only recently I found I can no longer go into an MRI where as before I could easily.

I'm sorry that I upset you. It was not my intention.
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I am so glad you recognize the need for professional help. You are right. And you are far from alone.
I would never have been strong enough to be in home caregiver to anyone 24/7, but I did manage my brother's Trust as Trustee and I was his POA. Just getting all of that together from half the state away made me so anxious I thought my eye tic was permanent. I was jumpy. I was afraid. And I will be so honest as to say it has, at 80, left me less strong. I learned a lot. I did a great job, and now it is over. I can recognize and appreciate that, BUT, it has made me a bit more "fearful" of everything from airline flights (which I had cancelled until I thought I'd go nuts) of finances and documentation, of loss of my partner and what that would mean. To say nothing of the tech that keeps passing us by as we age. It has in some ways made me stronger, but in some ways there is--just as you observed--a PTSD that persists.
I wish you the best and my heart goes out to you.
(And here's just how nutty it can get. Sometimes I lay in bed awaiting sleep saying "spell world backwards" or "subtract by 7s from 100", and etc. Hee hee. It is both funny and NOT).
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Christine44 Jun 2022
I waited to comment on your post (the last one as of writing right now) as I couldn't hold back. Lynn's mention of a doctor yelling at her and her husband made me so angry I would have launched into a major rant -- as I have been through this. But that's not what she needs to hear. On that point, however, I'll just say this: in my humble opinion if a doctor starts yelling at you, I'd say: 1) get away from him/her asap IF it's possible; 2) do not waste time "reporting" this MD to any professional body; such entities, like most professional or oversight bodies are basically "self-policed" (I believe) and nothing will happen to the doctor you report. Public health bodies (i.e. at the state level) are another possible avenue to explore for "reporting" a doctor, but I wouldn't hold my breath on any consequences from this tactic.

Your comment about "the tech that keeps passing us by as we age" caught my eye. I have been trying since January to purchase a new laptop which I absolutely need. After a TON of research, I finally bought a new one at a major retailer and was so excited to turn it on so I wouldn't have to keep borrowing one from a library. I never got to first base, meaning it simply wouldn't turn on -- and this was from one of the two major manufacturers of laptops. The retailer refused to give me back my total purchase price -- they wanted to keep $300 -- but after a major 3-month battle which involved dozens of pages of documents faxed to my bank, accusing the retailer of fraud, I finally prevailed. (I'm still using a borrowed laptop from the library). Smartphones are another story -- and we need these, like the computer, for medical related questions/appointments, etc. I'll not go into my experience in that realm but I'll just say this, again based on personal experience: you have to be VERY cautious in putting any new software on your phones (aka "software updates"). If you're unsure of what the update will do to the phone, or whether your phone is new enough to handle the update, just say no.
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My mother is 90 years old. I live with her and am her caregiver - Home Care comes once a week to give her a bath, which she complains about every time. I am SO unhappy and depressed and can’t stand being here any longer. I know she’s my mom and dementia isn’t her fault but all I want to do is run away - better yet, move her into a home. Our relationship is in ruins and my patience is pretty much gone. The constant bedding changes, diapering, monitoring her every move is just too much for me to handle and I’m a wreck. She’s having no fun either. A facility? Waiting lists and financially almost un-doable. I hate to say that I hope she dies soon. Terrible to say, I know, but that’s how I feel. Poor her AND poor me! I feel as if I have PTSD too and I don’t think that’s unusual given all the postings on here about caregiver burnout and depression.
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