Has anyone suffered PTSD from caregiving?

I was my Dad's sole caregiver and was eventually, after 3 years of Chronic Stress, ended up with a diagnosis of PTSD. Yes, you can, in fact, if you look it up, Chronic Stress Disorder, untreated can affect the brain to the point of running on empty, literally. Psychological, if done correctly, will require some medication to restore the brain activity (which I gladly did). I didn't care what the diagnosis, I just wanted to be able to cope without reliving it, physically, and mentally.
But to agree, C S D needs to be considered as it can eventually turn into something else. After being under persistent stress for 2 years, my father called me in the middle of the night telling me his (dead) father just threw him out of the house and he was crying, "Where am I goin to live?" Then, he didn't answer his phone for the rest of the night. I drove up the next day and he had packed his truck. I relived that so many times and became reactive. It's all connected, but caregivers need to let their doctors know they are caregivers. You'd be surprised at how many times they hear that. And a good doctor will respond. I just wish more caregivers would go to the doctor and inform then of their lifestyle before they get to the point where they can't.

Lynn64, my issue is more of a phobia than PTSD. For me, I developed a phobia of driving that started when I was taking my parents all over hill and dale, for one thing or another.

Then the phobia accelerated when my Mom could no longer get into my vehicle and I had to use their car that they still had, which I always hated to drive. It was like steering a large dining room table down the highway. By the time I got to our destination, I was a nervous wreck, fighting back tears.

Eventually I mentioned this to my parents, and they just looked at me like my hair was on fire and said "who is going to drive us?". Mom refused to ride with a stranger so cabs and the senior bus were out.

My parents have passed but, to this day, I still white knuckle it when driving. My driving limit is just a few blocks. So sad, as I had loved to drive :(

i think one can definitely get PTSD from caregiving. first, some LOs are extremely abusive. being treated terribly day after day will affect you, no matter how tough you are. similarly being around grumpy people all day, will affect you. second, some caregivers are pretty much slaves. of course SLAVERY will cause you to have PTSD.

i wish those who need healing, to heal. hug!!

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.

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!

Dear One, You have been dealing with a lot of stressful events on your own. That adds stress onto you that need not be. Please consider finding support group(s) for the type(s) of diseases your spouse has. The members of these groups understand and can give the best advice. Also take the time to find a primary care provider for yourself that you can trust to be yourself with. Make an appointment to get a good physical for yourself. Start doing things that nurture you (aka self care).

Hi Lynn,

It sounds rough.

I go to a therapist when I can.

I got a gym membership to the YMCA and go there when I can.

I try to get together with friends when I can. I find the laughter really helps.

PTSD diagnosis is used very casually by lay people. Diagnosis of true PTSD requires meeting very specific and rigid criteria which are not found in caregiving. What caregivers may develop, is acute or chronic stress disorder. Yes, it requires psychiatric treatment when very severe.

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.

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.

Before my 73 yr old sister suddenly died last year of a blood clot, I thought that if we spoke again I’d ask her if it ever crossed her mind that we may have PTSD because of our crazy childhood.

In the 50's and 60's after dinner neighbors who live in apartment buildings would often lean on an open window sill to watch a stick ball game in the street or just listen to the sounds of the street, and from each other’s homes.

It wasn’t unusual to walk to school the next day with other kids & poke fun at each other about how we heard one of them hollering bloody murder the night before as their parents were giving them a beating with either a leather slipper or belt. “Franky, boy did you get it last night”. Everyone had a turn. We were all mostly first generation kids of struggling Polish, Italian, & French, survivors of WWII. Some of the parents had numbers tattooed on their arms & almost all were high strung. After a hard day of working in a sweat shop, or as a cab driver, etc. many of the kids were getting beatings as though they were adults. Blind rage was normal. I believe my father who fought & was wounded in Europe and my mother who had alcoholic parents as a child, lost them in her early teens, and then hid during the occupation had PTSD, and both acted out.

This October my husband and I will be married 28 years. I finally found my home in him. He was an admirable, beautiful man with a great heart, a solid guy with the best laugh I’ve ever, use to, hear. Somewhere between 15 - 20 ago my husband started showing signs of Alzheimers Disease. At first and for a long time I was very resentful that once again I was cheated. Early on our AD journey I was so deeply exhausted and burnt out I developed rheumatoid arthritis. I helped care for my in-laws, and I helped spell my sister with my parents before they died too.

I found my tough childhood made me a relentless investigator to find out how to manage my RA perfectly. The violence I sometimes dodged and sometimes received mercilessly toughened me up to deal with the absolute lack of help, the feces, the incessant repetition, and the excruciating boredom, I endure now. 

I want to talk too about my dearest friend who died when she was only 49 of Lupus and Scleroderma, (I'd run in the middle of the night to take her to the hospital too) and more importantly about her mother who also has Lupus, one kidney, is 82, has two autistic sons, one in a group home while the 44 year old still lives with her. She is still his caregiver. This woman has every right to be a hot mess, instead she exudes the most sweetest cheerfulness & gratitude that is incomprehensible. Her daughter, my friend, knew she was dying but she too lived everyday with gratitude in her heart.

For decades I had insomnia. Every night in bed I’d think to myself - Omg, I think I’m actually falling asleep this time. This is it. It’s really going to happen. Here I go I’m so relaxed, happily melting away only to hear out of nowhere Julius Fucik’s - Entry of the Gladiators, but more like in the cartoon Madagascar. Sometimes my stomach would be jumping repeatedly. For years I just took it and never said anything but during one check up I mentioned it & I was told, idiot, that’s a panic attack. Long story short, :),I found that I wasn’t hydrating enough. No more jumpy stomach & I fall asleep most times more easily with the help of a white noise machine.

Everyone has valid different levels of sensitivity. I truly get that. And I just looked up the many possible causes of PTSD. It mostly indicates assault, car accidents, prolonged traumatic experience (Nelson Mandela anyone?). 

But people, man, oh man, my mind keeps going to soldiers who have seen, & experienced, horrors, my dad actually gathering the intestines of his friend in an effort to put them back into a place that was not an abdomen anymore, and the many mothers whose children became unrecognizable from a shooter.  

I don’t know folks, something, but maybe not PTSD.

I remember the first time I visited a hospital emergency room after my mom's death. My hubs had a gall bladder attack and we had to go in. When I was sitting there in the waiting area it brought everything back. I felt this black fog taking over me. You know in book's when they describe this feeling like the room is getting smaller and smaller. That's the only way to describe it. In fact even just sitting in a dr.'s office waiting room brings me to a place I'd rather forget.

So no it's not unique to you Lynn. I wish I could give you advice on how to conquer it. Prayer helps me. If you are a believer ask God to shine his loving light upon you. Heck, even if you aren't a believer.

Lynn64: Although one could get traumatized about visiting their physician, it's detrimental to one's health to do so. Of course even though you know this, it still occurs. Hugs sent.

Yes! Basically, you are under so much stress that your body can't produce enough serotonin to cover it. You are running on empty. By the time I went to my doctor, he looked at me and said, "I see someone who has about 50 thoughts swirling around over her head and they have no place to land".
First, he prescribed me a mild, but effective sleeping pill to help my body repair. I was only on it for 3 weeks so as not to build any kind of addiction; just let me body get some much needed sleep. Also, he put me on a serotonin uptake inhibitor. Basically, it helps your body build its own serotonin by blocking the stress hormones.
It was a life saver for me, and my dad's anxiety was so off the charts that I asked his doctor if he could be put on one too. I truly believe my dad lived a longer and more fulfilling life because of it. Whatever the side effects might be (we never suffered any), that outweighed my dad dying of a broken heart and anxiety. I hope this helps. My husband later asked me if I could tell if the SSRI's were working, and said, "I don't know. Do you think they are?". He said, "I like you when you're on medication". LOL So, it obviously helps. And I saw my Dad's anxiety go down too after I got him on them. They are a natural way to help your body adjust to being stressed.
During the time I was taking care of my dad, I was writing a column for the newspaper on being a caregiver. The article(s) that covered this subject were called "Breaking Bad: the caregiver on overload". I'm also turning all of my experience into a book. Being on the flip side of this, I joined this group to help others going through what I did.
I also pooled mine and his money together and hired a retired lady from a local church to come in and give me time away from caregiving. She was $10 an hour and became a part of the family. When my dad got to the point of needing 24/7 care, she moved in and took care of him for free room and board plus $300 a month, and anything else I could bless her with.

You certainly have had an abundance of traumatic experiences related to your husband's illness. I think that perhaps wondering about what happens to him if you get sick is part of your anxiety. If you haven't already done so, I suggest you create a detailed contingency plan.

The advantage of using the medical system, is that we are given the opportunities to take advantage of what has become curable in the world of medicine and we can then make our plans for fight or flight. If you never go, you are never given second chances.

Last summer, I left Maine for Florida to "help" Mom with Dad's care. He was diagnosed with MDS and had a cancerous tumor on his kidney. I had to drive in Florida traffic to numerous doctors, rehab centers, hospitals, etc., in a totally unfamiliar city, so I know how that feels. Dad's health, both physical and mental, deteriorated rapidly and I soon found myself in the position of "mother" - bathing him, changing his diapers, helping him dress, trying to get him to eat - to a fully grown man who considered me a child. He passed away in November (2021), but I still get panic attacks if I have to go to a new doctor or pass the Ensure aisle.

PTSD is very real in care givers and you definitely need to see your doctor and bring a list of everything causing your anxiety. Your doctor may be able to recommend services for you and your husband to give you respite from some of the driving or caregiving chores. He may be able to give you something to take the edge off your anxiety (mine did and it was a Godsend! I could sleep again.)

Please take care of yourself. Good luck.

Not to put a damper on things, but a lot of times, so I’ve been told, the caregiver dies before the person who is being cared for. Caretakers neglect their own health to help support the person whom they’re caring for. You MUST get yourself the help that your body is craving. Go to the doctor and see about your own health. I’m sorry that doctor yelled at you about going to Seattle, but get yourself checked ASAP! Learn how to meditate if you don’t already. Call the crisis hotline JUST to talk with someone. Monitor your own blood pressure with an at home monitor. Watch what you eat so that that won’t be a factor as well when it comes to dealing with your health and diabetes and other health ailments that come from terrible eating. Can you get outside in nature for at least a ten min walk??

Yes . When you start having panic attacks and are so burnt out from taking care of people . Yes

Yes I would guess this is common. My husband felt a kind of PTSD after his mother died. It wasn’t the medical appointments , but watching her die. I think therapy is a good idea.

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.

I don't know whether it is over-anxiety or PTSD....YES! Mine showed up when I was on vacation and I was getting texts about my Mom falling and how they wanted to put her on prescription drugs. My Mom is 99 years old and very sensitive to prescription drugs (life issue...which all of us siblings inherited). I called up my sister-in-law and she took care of the issue.

However, I had angst the entire trip.

When I got back home, my Mom seemed fine. All the workers in the MC unit said she is fine. No drugs. However, I was not fine.

Overtime, because I see my Mom nearly daily for a short time, my anxiety has lessened. Sheesh...

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.

Distrust of doctors is warranted. The medical care delivery system is part of the problem. Care is fractured and splintered. This is my sad experience. I want to be healthy not only for myself, but also for the one I am caring for, my 99 year old mom. The right doctor IS out there that knows how to talk to you without increasing stress levels. (I luckily found one on a telehealth visit from an Urgent Care!) If your husband's particular disease has a foundation, that foundation will provide an incredible amount of support for you! (e.g., American Cancer Society or the LLS). My case manager provided me with Lyft rides to doctor appointments and arranges them. My County has various programs. These are stress busters by themselves.

Yes, a combination of dealing with death and my mother.

Lost my husband, father & cousin (like a brother) all in five years, all from cancer.

I then had to deal with my nasty toxic mother.

I went to therapy, no pills, helped me work through the problem, basically I am ok today, still have some minor issues.

Seek help

Yes! I experienced this. An ER doctor even stated what was happening to me was a form of PTSD. It’s been two years and I am better, but I still have a few reactive episodes. I completely understand this feeling.

Real PTSD is incurable. It's false that Paxil will cure it. There are millions of war veterans with real PTSD from who will be very happy to hear than somebody got cured with Paxil.

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.

If you think you have developed PTSD from a doctor that yelled at you, go ahead and try to hire a lawyer to sue the doctor for damages, No lawyer will take your case because they know more about PTSD than Goggle pseudo-psychiatrists..

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.