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

She's been dead a number of years now, so you'd think I'd have learned how to manage by now.

Hello, I work as a professional caregiver, but I was the primary caregiver of my grandparents for about 7 years. I was misdiagnosed schizophrenic by my PC because after my grandfather died I was left with auditory hallucinations of my grandfather yelling my name whenever I turned on any kind of running water. I went to a schizophrenic specialist that diagnosed me with developed "caregiver psychosis" (that was a relief) from neglecting my years of "caregiver burnout." It took a year for the hallucinations to stop, but the lack of personal individuality took a few more years. I had a lot of cognitive behavioral therapy(CBT) and got off the meds and learned how to live life on lifes terms through CBT. The post caught my eye right away, as I relate. I have a long term goal to write a "self-help" caregiver guide/book explaining all of the psychological aspects in a very REAL, and relatable way. The closest I came to was "Elder Rage", but it is more pleasurable during the experience. Check out the CBT, you are challenged and must put in the work to get the results. ^_^

Please find a compassionate therapist to help you on your caregiving walk. It sounds like you are under considerable stress.

International Caregivers Association (ICA) is pleased and honored to present Teepa Snow in person as an ICA trainer/presenter.

TITLE: Understanding the progression in dementia: Seeing more than loss and learning to use what remains

DATE: December 15, 2014
TIME: 7:30-8:30 PM, EDT

This unique presentation is brought to you compliments of ICA. ICA is changing the course of dementia care. It will be of special interest to doctors, nurses, aids, family caregivers and family members.

Sign up early as this is certain to be a full-capacity. Many have viewed Teepa Snow around the world on DVD. Now is your chance to see her in person. Ask her some questions and learn all about the benefits of understanding the progression of dementia in a positive way from a world expert. All are welcome no matter where you live in the world.

This may well just be a dream, nothing more sinister.
Caring involves supressing rage and anger and impatience. Whether you are at times angry and frustrated with your loved one, or at the disease/old age reducing them to 'toddlers'.
It is only natural that that suppressed anger/frustration finds a way to pop out in your dreams.

The fact that you never shouted at mum means there is no problem here. But even if you did on odd occassion, we can't beat ourselves up.
It is the toughest job and none of us are really trained to cope.

You sound upset with yourself, yet you have no need to be.

I'd recommend Mindfulness Training (great iphone app, Mindfulness Daily, that reminds you gently and talks you through breathing and Mindfulness exercises... got me through awful last 3 months of my lovely mum's life this year, and the funeral, and is incorporated into my life now to the piint tgat 2 deep calm breaths calms me diwn immediately, whatever the situation.
You can also scour YouTube for Mindfulness Training clips... try a few to find one that works for you.
I recommend them to everyone on this site. Sounds a bit 'hippy', but I have my 89 year old dad hooked on them now too. (You can buy CDs if you don't have iphones.. but Youtube is a great free resource.)

@ geneousentropy ~ I can empathize with you. I am in the "rehabilitation" stage after providing care for my husband who is living with vascular dementia. It has been about 15 years now and it is not yet over as he is in long-term care.

Many long-term family caregivers suffer from a "companion symbiosis" which is mostly report in a husband-wife team but I believe is also in other situations (such as yours). This requires therapy and a lot of self-care. I know as I am at the very beginning of this process for myself.

Good luck to you. You are an angel.

Gemma2

You are not alone. Every caregiver has some wild dreams and maybe some help for you is needed. When we can't sort it out for ourselves any longer we must not be ashamed to ask for help. This caring group is a great place to start.

Post traumatic stress is usually a term applied to returning soldiers these day who have experience first hand horrific events. It can happen to anyone who has been through something stressful. With the military something in civilian life will trigger the memories and for some it becomes so bad they can no longer function. For the rest of us something as simple as a smell will trigger memories which may be pleasant or unpleasant. usually dreams result from something that has happened in everyday life and while you are asleep your subconscious does the rest.
if you are so badly affected by dreams such as this a professional can be very helpful
Just airing it on a forum like this and hearing other peoples' experiences is a very good start.

generousentrophy, I would encourage you to write your caregiving maunual. I too have read Elder Rage. it was of course only one woman's struggle with the problems of caregiving elderly parents. it was a very interesting story and naturally the author did experience the stress and frustration and clearly if had an adverse effect on her life and health but she had the one thing most caregivers do not have which was the money to be able to seek help ang get respite. You have the advantage of being both a professional and family caregiver which are very different scenarious and have worked with more than one client so could be very objective in your narrative. i would suggest something like "Caregiving for dummies" Short easy to read chapters dealing with one problem at a time more like the questions and discussions on this forum. Also include all the basic nursing instruction because some one will move Mom into a nice granny flat in the home and she joins them for meals and they take her to appointments elc but when the time comes have no idea how to help her bathe and deal with other personal care.
Everyone has the best of intentions but often do not have the information to be really helpful. For example a grab bar by the toilet is a very good idea but no one thinks to sit Mom on the toilet and let her tell you where it would be most helpful. Go for it this would help so many new and prospective caregivers and a few old ones too

I believe that our "new normal" is going to be different than before stressful caregiving. Even for those of us with multiple people to care for, certain events with certain people can come back to us for a long time.

We can have "flashbacks" for years. Still, if you are having serious problems, you may want to see a counselor for awhile just to talk things out.

Just to put things in context a bit, you may also like to read: https://www.agingcare.com/articles/after-caregiving-is-stress-the-new-normal-163252.htm

Take care of yourself now,
Carol

SAY AGAIN !! Every caregiver has some wild dreams
We must not be ashamed to ask for help Seeing a shrink or social worker does not mean your going crazy

As carers we are all http://tinyurl.com/pqqeq8t in a box of frogs

I have to say there is a weird feeling of 'come down' after my mum's passing. Was a very intense stressful couple of years then a weird vaccuum that leaves you feeling very odd for a while. Whilst you don't miss the stress, you miss the person. Guilt over any little thing can pop up (awake or in dreams)

Not usually to the point of psychosis as the first lady experienced (but she has a separate mental condition, not 'caused' by caring)

One totally normal understandable dream does not PTSD make! Don't panic or read anything into it.
You sound a lovely kind person. You never did raise your voice to mum (though I think there are times we all feel frustrated and have to suppress it... hence these weird feelings pop out in dreams... Lord, if what we dreamt actually reflected what we really felt, then I'd be married to my cat, and would be anle to fly!!!)
Don't beat yourself up over being human.
Really does just sound like a vivid dream.
Forgive yourself for any internal frustration/anger/impatience you must have felt at times... allow yourself to feel what you are feeling. You are a good person who did a tough job.
I think you deserve some you time now.
Plan a trip to someone you could not get to see.
Lunch with friends!
What would 'well' mum have wanted for you now? She'd want you to get out there and have some fun.

Wonderful answer, DaveIFM!
Carol

Dear hobbesmom. When our caregiving responsibilities end one may think that so does the stress but in truth in will linger an average of 3 or more years. After 21 years caring for my husband who had lung cancer/brain cancer/dementia, I too had issues and for fear that someone would think I was a nut I held them inside. Eventually landing myself in a psychologist chair. He was quick to point out that caregiving is more than caring for our loved one, it is a project that we work on night and day. It consumes our thoughts and our lives. Once our project ends we have to rebuild. I kept with my therapist for 6 weeks then left with a better understanding that those years of caregiving are embedded in my behavior but over time I will adjust. Be patient - it's all part of the healing process.

You probably have worries and concerns that are coming thru in your dreams.I cannot count the number of times I dreamed about my patients over the last 30 plus years,Some funny,some horrifying.IF you didn't care,
,I was told, you would not dream and let things bother you.
If it gets to be too numerous or too much to handle find a compassionate counselor,one who has background in the field not someone off the yellow pages..eenie meenie minne moe does not work...good luck

I believe PSTD does exists in caregivers. I used to have dreams after my father died that he was alive again and we were going to have to experience his illness and death all over again. This was a recurring dream for a few years, but I haven't had it in a while. Stress in real life creeps into our dreams. I have been caring for my mom now for 4 years and thankfully haven't had any bad dreams, yet!

PTSD that is.

I have heard of PTSD in caregiving; and there are so many other factors that can add additional stress. For example, when siblings create additional issues without offer of assistance, or while providing caring your own home is damaged by fire, if Mom passes, siblings sell the house, you have lost nearly everything over the course of caring, including your best friend and one of your best sources of support at too young of an age. And there are student loans to repay from that Master's degree completed shortly after beginning caregiving, the potential employers that think you are not suitable because you have not been working in a number of years. I could go on and on. Yes, it has all happened and is absolutely overwhelming and may never be able to overcome all of this. First step apply to have student loans forgiven so they don't go after my social security which I am eligible for in two years.

The more I read these posts the more I believe that a person can't possibly take care of a grown adult who is no longer able to care for themselves 24/7. Nobody can sustain that kind of schedule. That's why the work week is only (should be only) 40 hours. Caregivers should not work more than 40 hours period. And even that is too much when you are all alone with someone who has dementia. I know that it is a difficult situation but if I were to talk to a caregiver I would tell them to detach from the emotional end, step back and look at the whole picture. Would you work for someone else all those hours and in that capacity? Would you, as a boss, make an employee work all those hours, isolated with a person who no longer acts of behaves normally? I believe in serving others but only to the point that you are not exhausted, depressed, resentful, bitter, isolated, sad, stressed and/or ill because of the circumstances. I believe that God wants us to be happy in our service to others. Caregivers need to assess their mental and physical health on a regular basis. Doctors and nurses also serve people and do much good for others - but they don't work all the time, they usually don't work alone and they get paid very well!

im one year post watching my mom lose her sanity then her life and now im watching my aunt lose her mind . " rebuilding " onesself is kind of where im feel im at right now . when i do something thats just for myself it feels hollow and trivial . caregiving evidently programmed me to put my own needs on a back burner . theres such a joy in giving and im missing that joy / purpose ..

I've been on Lorazepam for stress for 5 years and it helps at times. My doctor is very stingy with them and doesn't understand why I need them. I am probably addicted to them, but I don't know where I would be without them. I'd rather be dependent on these pills then have more stress. For 4 years I have put up with helping my father during his bone cancer, was falsely accused of stealing thousands of dollars from my parents while helping them. We found out months later it was my sister. I had breast cancer with chemo and radiation, been taking care of my elderly mother who has COPD and is on oxygen 24/7 never drove or made friends. Lost my 55 year old brother 2 months ago and don't talk to 3 siblings because of their lack of help with my mom. PTSD to the max!

It sounds as if part of you is still on guard--and pulled together two strong fears to create your nightmare: fear of your mother falling and fear of losing control over your own anger or frustration, which could hurt your mother in a different way. To a caregiver, both of these represent failure to protect the loved one. The emotional tone of nightmares can definitely follow you through your day. Reassure yourself that your job has been successfully completed. And it might be better to go on with the day you have planned rather than stay at home with the remains of your nightmare, especially if it will be with someone you can talk to, who will reinforce reality (that you did well, your mother was loved and cared for to the last).

Sometimes a dream is just a dream. Our brains are mysterious! I have had three or four dreams of being lost in different factories, where I worked 30+ years ago. And dreams about the people I worked with in those factories. I have no clue why my brain is dredging up these old relationships and locations. I've actually looked up dream interpretation websites to try to understand what is going on, without any luck.

It could be as simple as you were out somewhere and saw an elder who reminded you of your mom and you were concerned about how that elder was walking or how their caregiver was treating them and your brain filed it away and now has turned it into your dream. If it recurs and it's worrying you, see some one. But if it's one very vivid dream, just let it go and observe it with curiosity.

Carol gives great advise (thank you Carol)... Boy do I know about stress... After 10+ yrs of caregiving for my mother, I have learned to counteracting stress because it started to trigger my body and I didn't want to get sick. Stress can accumulated, so try to work on it through meditation, friends, exercise (keeping busy), etc. while knowing what a great person you are!

I think there is PTSD for caregivers. Anything that is traumatic can cause it. I am also finding with my situation the caregivers receive little attention for their needs when asking for help. I have been told to get out of my situation if it is bothering me or increasing my anxiety.
Years ago when my Daughter was molested I was told to place her in foster care as she was pushing me over the edge (from a therapist). This is unfortunate that the views of some are not based on your will but on the wills of theirs. My view was it is MY Daughter and MY responsibility and she was sick. I needed guidance not more get out of it advice. I dropped the therapist. (I was also diagnosed with PTSD)
I get similar advice with my Dad. Instead of helping me cope it us usually get out of it. It is the popular opinion of many.I think if there was more support many would be able to deal with their caregiver roles much better.

This site helps me so much...is a daily help to me and helps me 'sort it all out' ...makes me feel less sad, guilty, stressed, frustrated...I don't feel alone when I read this. Helps me cope and gets me thru another day...Thank you...

I know I have been seeing more and more articles on Caregiving and stress in our local newspaper which goes worldwide "The Washington Post" so that is good it is becoming in the forefront. Even WebMD has a section on Caregiving Burnout.

I went for therapy for about 6 months, the doctor was ok but she didn't have much background with talking to patients dealing with aging parents. She did give one good bit of advice that has stuck with me...~~ that my parents made their choice to live where they are living, therefore they need to take full responsibility of that choice~~

And occasionally I will mention to my parents when they complain they have no transportation that they choose to remain in their home of 35 years instead of going to a retirement community that HAS transportation for them. Or if they grumbled they are bored, again it was their choice, yada, yada, yada.

Definitely not alone. At times it all I can do to not lose my temper with my mom. She was up again wondering around last night at 2:00 AM. I tried to explain to her that I have to sleep so I can function at work and my fear of her falling does not allow me to do that. All I got was I'm not sleepy, go to bed and leave her along, UGH! I know it's the disease because my mom is more caring than that but when I sort of dose off I do dream she has fallen, wake up in a panic and run to the front of the house just to find her back in bed. Dream or not, it's disturbing and since I have seen her fall before it was the most heartbreaking thing to sit on the floor and hold my mom while she cries because shes not only sore but upset she got out of her wheelchair and forgot she can't walk. :(

I was sound asleep at 5:30 this morning when I thought that I heard my husband say "Hey" and was standing at the door to my bedroom. It seemed so real that I could not go back to sleep. He is under Hospice Care at home until Sunday when we will move him to a Memory Care home on Sunday. He not only has Vascular Dementia and severe Sundowns but also End Stage Congestive Heart Failure which is becoming a major issue in his overall health.

Captain, I feel the same.

It was so clear to me that my priority was to care for my mom. What else could top that priority? I did it for years. No question about what came first. Her life, her last years. She was my mom after all. She had given me life and cared for me as a child and now it was my turn to be there to care for her, when she needed me and for what ever would make her last years better.

After she passed away, and it has now been years, I still struggle to find something as important as all that. On one hand, it was a HUGE burden and a life disrupting challenge to be mom's primary caregiver. It made me stop taking good care of myself, but that was not as important as saving her life. On the other hand, it gave my life simple clarity. She was the most important challenge, every day.

Today, and every day, I still struggle to choose wisely.

Each day, I'm faced with a wide array of choices and sort through all the possibilities. What is the BEST use of my time, right now? Hopefully I am making good choices, but it is NEVER as clear as it was when I knew I had to care for my mom.

Nothing is as important as that was to me and to her...

Generousentropy, I'm sure that your vivid and disturbing dream is a very common phenomenon among long-term caregivers. It made me recall one my aunt, who lived with her parents all their lives and cared for both of them until their deaths, told me, a dream. she also worried about and felt as deeply as if it had been reality. She had it years after her parents were gone, but after her dad died, she and her mother had downsized and moved into an apartment. She dreamed that her father had returned and was enraged that she had sold his "things' and demanded that she find them and buy them back. She awoke feeling terribly guilty and distressed, and it took quite a while for her to get over the intense emotions the dream evoked. We process our life issues when we dream, and sometimes it can help us come to an insight that we wouldn't have had while awake. And then sometimes, dreams can just express a lot of pain, worry and pressure that come with caregiving--maybe the hardest job in the world!