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.
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).
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.
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.
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.
Anyway I tried to make an
appointment to see a doc for a checkup but there will be a delay because I’m a new patient and I have to have my records sent. I also signed up for an online therapist. We will see how that works. I wanted to see a somatic therapist because I’ve done talk therapy and EMDR and frankly it didn’t do a whole lot for me so I wanted to try a different approach.
Thanks for letting me unload. It’s been helpful.
I see your point. But psychiatrists make many mistakes as well, mis-diagnosing a lot (throughout history and now too). We shouldn’t have too much faith in them.
And some things (like feeling traumatized, worried, stressed) are common sense. You don’t need a doctor to tell you, you’ve been traumatized, etc.
Some non-medical people are wiser than medical people: not only about the correct diagnosis, but the correct/good way out of it.
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!
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!
The LAST thing anyone needs in a stressful situation is to be yelled at.
You do need to talk to someone about what is going on. Someone that you can open up to, express your fears to without judgement.
Call YOUR doctor. Make an appointment if you need to. Explain the situation and ask that they refer you to a therapist. You might even want to contact the American Cancer Society and see if they could refer you to someone or a Support Group that might be helpful. Talking to people that KNOW what you are going through helps a lot.
Unfortunately so many caregivers put off their own appointments because they are are busy caring for someone else. You can not afford to do that, what happens to him if you get sick? Who cares for both of you?
(and 2 years of delayed appointments because of COVID makes making an appointment even more difficult. {just a side note to show how delayed...., I had surgery in January and my "post op" appointment has been changed again until June 21!})
Yeah Covid has made things really difficult. When my husband was having complications- couldn’t get him in to see someone for a colonoscopy. It was at least a month out. I had to force my husband into the ER and then they were able to do the procedure the next day. Good thing he was seen because he was having a good case of graft vs host disease which can be lethal if left unchecked and even when they are monitoring it- it can still take out a person.
I am going to get myself checked out
but I’m hoping I can get a therapy session in before I have to do it because it won’t be easy. My friends tell me they give their burdens to God to get them through difficult times. I have been and will be doing that every single day. Thanks for your response.
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.
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.
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
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.
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...
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.
allopathic medicine is a HUGE destructive aspect of society and medical errors are the 3rd greatest killer
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.
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.
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.
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.
I'm sorry that I upset you. It was not my intention.
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.
*Even if you were a doctor or in the medical field in your pre-retired life, you are NOT a doctor HERE on the forum (rendering YOU a lay person) and have no right to diagnose people or tell them what they do or do not have. Period.