Is there such a thing as post traumatic stress syndrome for caregivers?

vstefans, The 5 star rating was on the medicare.gov. site that rated nursing homes which the social worker at the hospital arranging the rehab for my Mom suggested I check out. The place also hyped it's 5 star ratings like it is some hotel or resort but they could not seem to take care of some of the people coming there for rehab. I saw several people get raced out of there by ambulance, one being my Mom for the delirium from the UTI they ignored.
As for getting a respite from the care, I am all for that but I do not have the siblings to give me a break so my breaks come in small doses throughout the day when I sit down with a good cup of coffee, watch ducks on the pond, or read something. If one can't get a break for a few days, then catch any little moment you can as even these little short moments of a break add up

of course there is..the stress of financial issues, the stress of medical issues and appointments, legal issues, the list goes on and on.When my parents passed my sister was the power of attorney as she lived closer..and she wound up having two lawyers, a cpa, and another elder lawyer to deal with the estate..spanning 2 states..fortunately she had the legal resources and the financial resources to handle this..she wound up unable to eat, unable to sleep, constant crying..finally I convinced them to take a freaking break and go away for a weekend to recharge..let the rest of us handle things..now when they do take mini vacations they have the security of knowing the rest of us can handle crisis situations...especially my handicapped brother and his problems...you have to take care of yourself,get help, I know things are tight and budgets are less and
less in the county,state and federal levels but take advantage of what you can...as stated above no studies have been done in this area..I doubt anyone of even considered the stress other than caregivers..working in the medical profession for 30 plus years even professionals can "snap"..we all need breaks..we are doing no one any good by going beyond "burn out"..I have seen it and experienced it..please take advantage of any resources to help..God bless and good luck

Katie22 - one thought and it may or may not apply - I think the "five star" thing was a designation a particular skilled nursing chain gave themselves, not a real rating or award or anything, BUT - it is possible for someone to sustain fractures with ordinary non-negligent care if their bone density is very low. This is often overlooked - not measured with bone densitometry, which is a relaitvely easy and painless test, they just have to lay still on a padded table for a few minutes to get it, and then treated. It may be worth looking into if it hasn't already. NOF.org has info and in general, any adult who gets a fracture in a less than major trauma (e.g. high speed car wreck) situation should have it looked into.

Aw, Texarkana, I feel for you. I remember how it was - I second guessed and agonized over everything, because deep down I knew my mom had lost her health and finally someone even told me it was when and not if she was going to die. I think I knew deep down there was nothing I could do to stop that or even delay that very much...given that, I think I simply did not want it to be my fault, even remotely, in any way shape or form. You can't stop worrying, I knwo that - maybe at best you can take the edge off it by being as realistic as you can - and I know you won't stop caring. And in the end I hope you have peace that you did all you knew how to do and then some to add life to years when you could not add years to life.

Yes. Seek professional help. I did. It helps.

I was caregiver to my son who was born severely multiply impaired. Never walked, talked, sat up or said Momma but had the most dazzling smile and beautiful brown eyes. After 24 1/2 years he passed away. I had years afterward of loneliness and adjustment because all i had from him was sweet smiles and laughter. Of course there was the total care he required and multiple hospitalizations but his smile was ask I needed to keep going. That said, caring for my father in law during his last 6 years was hell. He had been the sweetest man. His anger and taking advantage and refusal to help himself or go to a nursing home and refusal to recognize our sacrifices was irrational and frustrating. It was hard to remind myself of the kind sweet man he has been. Finally, was was hospitalized and went to rehab. Because he nor we could provide 24/7 care, he remained in a very nice nursing home until his death due to advanced Parkinson's 2 years later. Although I missed who he was I reel no guilt because I gave him all I had. That's all we can do.

Being a Veteran. I would say: Some personal Care takers could have PTSD? or have witness a Traumatic event & can have Flashbacks. Recently have heard the Va use to think! The only ones who had PTSD were mostly Combat troops. Looks like they are acknowledging. One can develop PTSD by others means as well. One can be Traumatized by Violence etc.

I am glad I found this thread and know that I am not alone. It is the constant worry,about finances, her falling, MD appointments,guilt because of things I know that I realistically have no control over, can't make her younger,can't cure osteoarthritis, afraid I won't hear her fall at night because I have my cpap on and had to take an Ativan because of the worry,constant guilt. Yesterday she starts about how she is lonely,she lives in the house with my husband and me.I have had to limit contact with her the last 10 days because I had a cold because of her but that is another story. However,I have to remind myself that when I was a kid at home, the only child, she couldn't be bothered to simply play with me,even for 30 minutes,she just couldn't be bothered, would rather read a magazine.Yet I know jump at noises because I immediately think she fell,I have awakened at night because I thought I heard her yell, will get up just to reassure myself that nothing happened.I feel "on duty" 24/7,the shift never ends. I really believe this is an unstudied area of human behavior, the PTSD that results from caregiving of an elder whether they live in the house with you or not.I would worry more if she were in a NH, at least with my situation I can keep and "eye" on her. Even so , I constantly worry I might miss some physical change that if I had just been smarter or a better person I could have jumped on and "saved" the day. It was put to me by a therapist that I am "only one person" and that did help, I just have to remind myself of that constantly,also it helped yesterday when I wrote down on paper all the MD appointments I had taken her to over the last 12 months, 45 TIMES, so it isn't like I have her locked in a room with no medical care.Was pointed out to me that 45x's wasn't all that bad in comparison to someone that was having chemo and radiation treatments,Oh God!Just one day at a time.

They are so quick to throw seniors into rehab here, probably to get the nursing homes more business, but then they fail to care for the people. The thing they do succeed at is grabbing at more money from medicare or the patient and their families and creating anxiety about what is going on in there. I am really soured on nursing homes after this experience. I think it is better to have a physical therapist come into the home if possible to teach some beneficial exercises.

All I can offer is learn from your experiences Katie and watch out for these things in the future. You can not prevent poor care and accidents but you can look under the bedclothes and question Mom. If she is reliable about events and tells you she has not had a bath for five days then talk to the staff and demand to see the bath book. Not to say it is reliable but it will let staff know they are being watched and mistakes may bring legal action. As I have said many times you have to look out for yourself in the healthcare field these days or in this case for your mother. You have more power than you think just don't start unecessary fights. Visit at different times. Walk slowly past other rooms and keep your ears and eyes open. stop and have a friendly word with other visiters. Check out the bathrooms both mom's and the visitors even if you don't need to use it. Go at meal times even share a meal if available. Think Sunday night salad. A small bowl of chopped beets in vinager with a dressing of tiny black flies or another Sunday, carrot salad with raisins, which turned out to be a small bowl of dry shredded carrot. These were my experiences on a med/surg floor so when offered rehab after my stay I quickly refused

I have dreams similar to this but it is always other people around us who fail to help such as nursing home staff or administrators, or anyone in the background of the dream. This comes from my experiences of people failing my Mom when she was in rehab for what started as a broken arm but developed a stage 4 bedsore in the first "5 Star" rated nursing home, had a hospitalization for UTI and delirium and then into a different "5 Star" nursing home where an aide let her slide to the floor while transferring her to her wheelchair, and she suffered a broken ankle. I feel traumatized and now have trust issues because of these failings. I am now taking care of her and she is bed ridden and at home with me with a visiting nurse and a physical therapist who is working to get her to stand and turn with assistance.
I often wonder after all this system failure and the very difficult issues Mom has, what will happen to my mental state when I am off this autopilot of taking care of her and finances, appointments etc. I believe these dreams are showing us what we fear, but at the same time dreams serve to cleanse the mind and show us our fears so that we can be aware of our feelings. Whenever I have a bad dream similar to this I try to busy myself the next day to "shake off" any bad feelings. I do worry about the trust issues I am developing because of all the loser nursing home and PT people that that I have encountered in the last 7 months. These physical therapists tell you she will walk again yet then when that doesn't happen at the end of the rehab stint they give you the robotic fish eyed response she will need 24/7 care or longterm care, of course hoping you will stick them into their facility for massive amounts of money. PTS....I think it is already happening with my trust issues....

yes

On a good note, I don't cry when I go to the grocery store anymore. :: sheepish smile :: I would do my shopping and here and there stumble upon either things that my mom or my grandfather would've liked and have a quiet meltdown. I did my best to pretend something was in my eye when checking out. Sadly, that was an epic fail. I look like Uncle Fester when I cry - there's no hiding it.

Grief has an odd way of rearing its ugly head. My father died in June but his bday was mid-December. On his bday, I was driving along with my daughter in tow. Shopping/doing errands/getting ready for the holiday and I was so pleased with myself for "handling" it well. He was a difficult man and became more difficult closer to his death. So, here I was being so proud of myself (this was before my mom died) and then I saw a State Police officer behind me with his lights and siren on. I pulled over to let him pass so he could catch the "bad guy." Guess what? I was the bad guy! Ha! Again, I wasn't in a rush to get anything done but it turns up I was going almost 20mph over the speed limit. I truly was shocked when he gave me the ticket. I chalked it up to all the times I sped and got away with it but it did rather drive home the idea that my sub-conscious was elsewhere. I don't know. Some could say that was a coincidence but I've only gotten a couple of speeding tickets in my life. This is not meant to be a post about him, in some ghostly way, remembering him. It's more about the fact that I thought I was handling the fact he had passed - and clearly I had not.

In my experience, I seem to go "nutty" the week or two before the holiday. On the actual holiday, I'm fine. I feel bad for the people who love me and are friends of mine because they have to deal with those 2 weeks or so. I wish there was a "Cave of Sadness" or some sort where I could just disappear for a while, but they don't because they care about me and are cognizant of what's going on...but, really, it would be best if I was alone for a while. I end up snapping at them or hurting them in some way which is never my intention. :(

Again, I must thank all of you for your responses. @coolieslady13, hang in there.

Chimonger, every year that passes I like to think it gets better, but it doesn't really. Maybe it does, but it's so slight I don't even notice. The kicker is that I know my mom would hate that. She was a very happy and joyous woman despite all her infirmities over the years. Her poor body just gave out right before Thanksgiving.

Thank you, again, for your response. It means a lot.

I can only guess at this...old folks seem to die at the end of summer or around the mid-November- through mid-January = holiday season. I don't know why. I think, or would LIKE to think they don't mean to die during the holiday season because even they know it dorks things up for eons. Is it their way of ensuring they'd be remembered?

Our Dad suddenly dropped dead on a Good Friday--which was very meaningful to him...only THAT year, it was also one sister's Birthday.
That made it hard.
But we all got some reassurance, that Dad couldn't have picked a better day than Good Friday, to check out, on his terms.
Sis has been dealing with it better than Mum...who felt terrible, and still does.
None of us can forget that day.

One sis got married on Valentines Day--people do things like that, to make it easier to remember--which is kinda a neat idea.

We can choose to frame the memories in a good light, or a sad light.
It's up to us to choose which.

But some folks can't make that choice---they have strange chemistry in them, which makes sad memories traumatic for decades.
The chemical feed-back loops just refuse to moderate.
Some respond to guided meditations, psychotherapy, and some to medications...but those suffering their losses repeatedly for many years or decades, need help breaking that cycle.
As more is learned about how to optimally handle PTSD, this similar cycling of sad/negative events, can also be helped.

Yes. There is. I was just diagnosed with that. I also have a subconscious need to beat myself up about the care I gave Mom in my dreams. In the dreams I deny her going to church, wont get her moved out of the house she sold so she is there with the new owners, I could go on. Can't give any advice though as I was diagnosed yesterday.

Ref anniversaries: I have ADD and could never remember my mum's and dad's anniversary or birthdays correctly (23rd Mar, 22nd May. 23rd Aug)... I always muddled them up, even at 48!
But I will never forget the day mum died.
I am glad it was not Christmas.
We are only human, and selfish or not, I am glad we do not have such a sad anniversary at Christmas.
Going to be hard enough having Christmas now without my mum sat chatting to me in my kitchen as we peel a small mountain of veg, and drink G&Ts. Was our special time, and I will miss it forever.
2 months on and still adjusting.

I just read up a bit on what is being called "Complex PTSD" which is more about having the symptoms associated with PTSD, but it's due to the cumulative effects of stress and/or dysfunction. So, yes, I believe that caregiving falls into that category.

Yes I undoubtedly believe it does exist, I believe that is what I began suffering with in April of this year. There is only so much stress we can handle before something has to give.

I can't believe it - I always tell my son that I think I have PTSD, but then add, I don't think you can have it unless you have had a serious traumatic war experience. It just dawned on me the last 5 years have combined to be a series of traumatic experiences. Of course, not like war. Constant falling, constant hospital stays, trips to emergency room and countless doctors and constant negotiating to get parents with different levels of dementia to make good decisions. After 5 years of constant criticism and complaints, I am pretty numb to most outrageous demands. But the stress is awful and never-ending. It is difficult when your best is never good enough.

I had to giggle at Noor's post too. Though I have to say those anniversary reactions are very real and can kind of sneak up on you. Mine have been close though imprecise maybe because I tend not to remember exact dates, and not as intense as the years go on. I get more flashbacks when someone else's loved one is declining than I do on "my" dates. And I've noticed, as much as I tend to overidentify with other people's experiences, no two stories are quite the same, and none are quite the same as mine!

It's generally a bad policy to tell other people how to grieve, or how MUCH to, but yeah, its possible to overdo, maybe out of ego tripping but maybe more often out of feeling disloyal to the person you lost if you don't remember to make a big deal out of their day. I think I'm going to go with Mother's Day, Father's Day, and All Souls Day for my folks to remember them specially.

It is important to remember that there are stages of grieving. Some people get stopped at a certain stage and just can't get beyond that without professional help and may not even remain stuck. It is different for everyone.

I'm no degreed professional, but my answer is irrovocably YES. I've only been caring for my Dad in his home for a little over one year, but the pressure has been enormous. I only get 4 hours of paid caregiver relief, but I can duck out to the gym in the morning & grocery shopping in the afternoon. I know I don't have it as bad as most, but what with not being able to go more than 5 miles from my Dad's house, my siblings criticizing & harping at me that "I have it good", isolation from my friend PLUS all the problems that crop up with my adult children, I still feel depressed a lot and feel like I'm getting dementia myself....

@Noor75, you said, "Sorry if this sounds terse, but IMHO to think or feel otherwise, or to view someone's death in the context of how emotionally inconvenient it will make future holidays, etc. seems a bit self-centered and small, compared to the largeness of someone else's life and what the loss of that life means in the bigger picture. "

All I can say is we all have our different strengths and weaknesses. I get what you're saying. At the same time, please tread carefully. Just because it doesn't affect you in such a way, doesn't mean it doesn't affect others. I'm lucky although I don't feel that way. I had a friend whose father passed on Christmas Eve. She puts on a "good face," but you can't tell me it doesn't affect her unless you're smoking something I'm not.

I had to giggle a bit about the whole calendar of death days on top of the whole usual gamut of birthdays, etc.. My mom did that. I vowed I would never do that.

Still, HER death day still resonates very strongly with me in ways I know she wouldn't like as well as a few others who were very close to me. Ultimately, I focus on the best memories I have of them, but I'd be lying if I said their loss doesn't affect me.

In short, don't be a d*ckhead and all high and mighty. youtube/watch?v=SjnYRD2vm8E with given props to Smokey Robinson.

Noor75--
A hearty AMEN to what you said. I grew up with my mother morbidly dragging herself around all of December b/c her father had died right before Christmas. Being just a child, I loved him, and was upset by a very sudden and unexpected death--but now I see that mother making every "anniversary" of a death of someone becoming a day or month of mourning.....just not ok. My mother keeps saying "not a one of you will mourn me, you won't respect my things, nothing means anything to any of you" and I don't get what she's saying. Is it terrible that I don't have huge sentimental emotions about a dresser my grandmother had? Or a souvenir she and dad got from the Grand Canyon 70 years ago? I know my daddy wants us to live happy and full lives. I'm sure granddad wouldn't have wanted Mother to mourn for 50 years like she has.

It was one year ago yesterday - 11/14/13 - that my dear 92 year old Dad died of late stage Alzheimer's disease. Although I'm glad he didn't pass on Thanksgiving Day, Christmas, or my early December birthday, if he had passed on any one of those days it would not have been the end of the world, or the end of future holidays for me. What is the 'end of the world' is that a really good man is no longer with us, and died of a crummy disease that took his brilliant mind and personality piece by piece - not that he 'wrecked' any particular holiday for me by dying when he did around some special days. Sorry if this sounds terse, but IMHO to think or feel otherwise, or to view someone's death in the context of how emotionally inconvenient it will make future holidays, etc. seems a bit self-centered and small, compared to the largeness of someone else's life and what the loss of that life means in the bigger picture. Besides, we all have the choice as to how we decide to move forward - we can decide whether or not will let our future special days be 'wrecked' for us, or whether we will do our best to enjoy the gift of life we still have left. I have a cousin who is constantly boo-hoo-hooing all over her FB page on the anniversary of every death she has ever experienced - from pet goldfish to dogs to friends to her (very) long gone parents - replete with postings of pictures of angels and sunsets, etc. I mean, really? Why? I know my Dad would never want one minute of my life wrecked or negatively impacted by his passing - especially if he had passed on a special day - and quite frankly with few exceptions I don't think that's what any of our dearly departed would want for or from us.

thanks hobbesmom! you are correct. I can't remember what we were talking about but he was in the ICU and he grabbed my arm (not super hard) and he said "shut your mouth or I'll shut it for you" or something like that. He has never spoken to me like that not even when I was little nor has he ever physically hurt me. I started to cry because I was so rattled and the nurse suggested I take a walk so both of us could cool off. I texted my family as to what happened and told them I needed to be replaced NOW. i think my sister came to relieve me. he is much better and is extremely pleasant and polite to the rehab staff as well as me and my family.