PTSD and Prolonged Grief in CaregiversJuly 2, 2013 • Contributed by Jen Wilson, GoodTherapy.org Correspondent
Palliative care is designed to provide comfort and peace to individuals facing terminal illness and end-of-life transitions. Caregivers who watch over someone in palliative care often get to spend precious moments with their loved ones in ways that would not be possible in a hospital or nursing setting. Individuals who are dying can benefit from palliative care by having those closest to them with them during their last days allowing for final wishes to be expressed and sentiments to be shared.
When death is sudden and tragic, as with an accident or unexpected illness, caregivers can experience shock and traumatic responses. Prolonged grief (PGD), also known as complicated grief, can occur when symptoms of grief are exacerbated and persist over lengthy periods of time. Experiences such as reliving the death event; being reminded of the death through mental, visual, or auditory stimuli; and even experiencing intrusive thoughts are all symptoms of posttraumatic stress (PTSD), which is not uncommon among bereaved parents and survivors of disasters or abuse.
But until now, few studies have examined whether or not caregivers of individuals who die expectedly are at risk for PTSD. To explore this issue, Christine Sanderson of Cavalry Health Care Sydney in Australia recently interviewed 32 caregivers grieving the loss of a patient who died from ovarian cancer six months prior.
The caregivers’ responses were assessed for signs of grief, emotional reactions to stimuli, language, and trauma response. For the most part, Sanderson found that the caregivers had high levels of resiliency, although some exhibited symptoms of PGD and PTSD. Specifically, trauma symptoms included strong reactions to sounds, smells, and sights that caregivers remembered from the palliative setting and also intrusive thoughts related to the death and the predeath period.
Sanderson believes that palliative care can be a cathartic experience for some, providing time for a dying person to be with family in the last days of their lives. But for some caregivers and loved ones, watching the death of someone close to them, while making no attempt to stop it, can be excruciating and lead to shock and extreme emotional distress.
Because caregivers are at increased risk for negative physical and mental health outcomes when compared to those who are not caregivers, exploration of resiliency or susceptibility after a patient’s death is essential. Sanderson added, “Skillful care of caregivers requires an understanding of the nature of their experiences, if we are to reduce traumatisation of vulnerable individuals.”
Sanderson, Christine, et al. (2013). Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study. Palliative Medicine 27.7 (2013): 625-31. ProQuest. Web.
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HollisJuly 2nd, 2013 at 1:09 PM
I am a little confused as I would have thought that someone in a cergiver mode, having watched the general health decline of this person for a period of time would have prepared themselves for this ultimate end and would have no chance of developing PTSD.
I guess I have always thought (apparently wrongly) that PTSD would occur in someone after an event that was shocking and unexpected- but if someone has been in this kind of care situation then death can come as no big surprise.
It’s really very sad to know that for many people there is still no healing even after the pain and the suffering of the one who has died has ended, because now they are having to tackle their own feelings of sadness and maybe even guilt.
LisaOctober 21st, 2014 at 3:54 PM
The reality is that much of the trauma is from the suffering that comes before death. In my case, I still have my mother here with me, but I suffer many symptoms of PTSD, although as time goes on I am doing better. For years, my mother was in and out of the hospital, due to complications due to her MS and prescribed medications. She’s been bedridden since I was 14 years old, it’s been 20 years of caring for her. There have been times she was suffering so badly even hospital nurses were in tears. Imagine your mother being kidnapped and tortured for hours while you sit and watch, unable to help make the pain stop. There’s blood all over your shirt because the IV came out and her blood spurted out all over the place. That’s what it was like. Her arms had to be tied to the bed so she would not pull out her IVs. She yelled and cried, unable to verbalize her needs or feelings. This went on for days, then weeks, then months. My dad and I took turns staying with her around the clock. My longest stay in ICU with her was a week and a day. I didn’t even try to shower. All I could do was stay by her side and hope I’d think of something to tell the doctor that might help. It gets to where you would do anything, ANYTHING to see the suffering stop. I’d gladly have given all my limbs if it would have made her better. Honest to god it’s like being forced to watch your loved on be tortured and feel helpless to stop it.
Now imagine things get better. Finally. The suffering has ended, and you all go back home with the hopes that things will finally get back to normal. Oh, wait, wait, it’s back. Time to go back to the hospital for another week of this torture. Back and forth, home to ER to ICU, back to home again, and as soon as you think you can breathe, you’re back again. Your adrenaline is constantly pumping, you can’t sleep because what is she gets sick again on your watch? Even though you would REALLY love to get some sleep, since hospitals are pretty much the hardest place to get sleep ever. You’re exhausted, you’re tired, you start feeling sorry for yourself. You’re frustrated. You feel guilty because all you want to do sometimes is leave and go have some fun or relaxation like everyone else. But you can’t because you are needed. By the person you love the most. Because they are suffering. This pattern went on for about 3 years. That’s after already having survived similar times in the past 15 years before that. It wears you down. It can mess you up. After my moms illness, as she FINALLY recovered, it took me almost 2 years to get back on my feet again.
So in my opinion, it’s the prolonged and sometimes violent suffering that leads to PTSD, not just death.
caseyJanuary 6th, 2015 at 11:27 PM
I completely agree with you. I am offended that people think its easier to deal with death in a hospice. Its not. Like you said, I saw my 56years old mom being squeezed to death and not able to do anything to help her. Its like watching the person you love the most being murdered in slow motion. No one can be prepared for death until it happens.
harryJuly 2nd, 2013 at 1:42 PM
had an uncle who was bed-ridden for over a decade before he passed.my aunt who was the caregiver felt hopeless initially.maybe it was resiliency or whatever but later she kind of got used to the fact that her husband is never going to be leading normal life again.she continued with that for over a decade and after he passed she didnt seem too hurt.maybe it was his time she must have thought.a close person dying before you can and does bring out unexpected feelings I suppose.
Daniel HaszardJuly 2nd, 2013 at 9:55 PM
Bravo our Veterans!
Current drug pharmaceutical PTSD treatment for Veterans found ineffective.
Eli Lilly made $70 billion on the Zyprexa franchise.Lilly was fined $1.4 billion for Zyprexa fraud!
The atypical antipsychotics (Zyprexa,Risperdal,Seroquel) are like a ‘synthetic’ Thorazine,only they cost ten times more than the old fashioned typical antipsychotics.
These newer generation drugs still pack their list of side effects like diabetes for the user.All these drugs work as so called ‘major tranquilizers’.This can be a contradiction with PTSD suffers as we are hyper vigilant and feel uncomfortable with a drug that puts you to sleep and makes you sluggish.
That’s why drugs like Zyprexa don’t work for PTSD survivors like myself.
— Daniel Haszard
BetsyJuly 3rd, 2013 at 4:20 AM
Is there a system for follow up care for these caregivers?
Just because you think that you may be ready to watch a loved one die, few of us ever are when it really happens.
There is a need for counseling and care for those who have given so much of their time and energy to take care of another.
But I highly doubt that this system of care is actually there for most caregivers.
ShaneJune 12th, 2016 at 4:36 AM
There is a system of care. Caregiver support and treatment can occur with EMDR. Please seek out a qualified EMDR therapist in your area. There are protocols designed specifically for caregiver healing.
MissDeeJuly 4th, 2013 at 6:45 AM
I had the shock and experience of this event. My mother was diagnosed with Myeloma blood cancer in April 11 but in October it just spread like wildfire and was given 3-6 months to live.
Reality was 2 months left of life. My mother deteriorated over the course of those 2 months. She was hospitalised and then in the palliative care for the last month of her life.
You had nurses but it wasn’t the same as having your own loved one care for you. So for me it was me her only daughter. At the time I had my daughter who was 11 month old baby and my son who was 5.
Juggling home life while being her carer. Then to top it off my house got shot at in a drive by shooting.
Trauma I didn’t. Know what it was. Shock yes. Shock and Adrenaline kicked in from the time mum went downhill to her passing away and after.
No support or acknowledgment has been offered. I’m trying to heal through this but finding it hard to get the right support. It’s like it’s all normal to go through this. It’s all bullshit, at the end of the day your left with trying to heal on your own.
ShaneJune 12th, 2016 at 4:40 AM
Please see my previous note. I feel what you are feeling. I too have been there and felt alone and angry. I have found relief through EMDR therapy. I hope you can find a caring therapist where you live.
PamSeptember 18th, 2016 at 7:50 PM
I am starting EMDR with my therapist. My mother was diagnosed with stage IV lung cancer in March of 2016. She died in June. I was her main caregiver and she entered in home hospice at my home. She died in my arms. I have no regrets but I cannot stop feeling like she is still dying. Every moment of the day I am grieving her loss and reliving the moments of her suffering and death. I hope the EMDR will allow me to recall my memories of her from before she was sick so that I can have the mother that I loved so dearly back in my heart.
Mary AnneJanuary 18th, 2014 at 8:14 AM
Re what Hollis wrote: As a caregiver, I saw things repeatedly over 12 years that I found shocking and excruciating. It felt like being in a war for a prolonged time. The PTSD is a response not just to the death (which, though medically “expected,” is not something a loving relative can fully prepare for)–but also to all those earlier losses, hard scenes of suffering with the sounds and smells, battles with the health and insurance system, family dynamics, and other forces along the way.
Debra MJuly 22nd, 2014 at 9:36 AM
Hello, I am a private, in home hospice caregiver. I have been treated for PTSD with EMDR more than ten years ago so I have a few tools to deal with the stressors involved.
My most recents clients were a couple who had been married 66 years and they lived in their daughters home. The daughter worked out of town a lot so I spent many hours hours with this wonderful couple for almost two years. While I am at peace with their passing, I am having symptoms of intrusive thoughts and as this has been going on for a month, I have an appointment this week with a brain based psychology center. I’m looking for more tools because I seem to have a special talent in helping those experiencing anxiety and fear, concerning death but I don’t want to be overly hurt in the process.
ShaneJune 12th, 2016 at 4:42 AM
Amen. Self care is critical to survival in this business.
KrisNovember 17th, 2014 at 1:03 AM
I’m thankful for Lisa’s comment. I did double duty…five years caring for my father with Alzheimer’s, and then a few years afterward, my mother with Parkinsons. I have other siblings, but none of them volunteered, and I loved my parents, so it was important I be there to help.
What you are not prepared for is the 24/7/365 siege that lasts sometimes years. Lisa was right about the necessity to survive on adrenaline from incidents and forced attention when you’re exhausted, the guilt if you do anything for yourself because your loved one is suffering. The guilt for even thinking about the time taken from your life, especially if you’re young. I started caring for my father at age 30, and I’m now 42. Eight of those years went to caring for high-needs parents. My work is another whammy–I work in the conflict/crisis/disaster field internationally, so while I thought it was good preparation, I wasn’t prepared when it was my own parents.
The after-effects now, after a year of no longer caring for my mother (she wouldn’t let me anymore–because she wanted me to have a life) are depression, definite PTSD, exhaustion, insomnia. Part of it was I substituted work when I stopped caring for my mother. The bottom line is: I think it’s not just the stress that comes from the caregiver role itself, or the grief of watching deterioration and death, but the fact that you have to re-learn to give a damn about yourself without feeling the immensity of guilt. If I’m not working myself to death, or doing something now to help someone else, there is pronounced avoidance, still, on questioning any needs I might have–even down to the basics– sufficient sleep, nutritious food and enjoying a meal instead of the programmed behavior over time to wolf it down and return to hyper-vigilance, even recreation or relaxation. You feel like hell–and selfish–because your programming is to be “on” and NOT thinking about yourself–only those you’re caring for. I have run myself into the ground this last year–and my work is problematic because of the stress from seeing the suffering from international conflict and disasters, and of course my “caregiver instinct” kicks in, and they become more important. I’m always a secondary consideration.
I think many of the psychologists and psychiatrists are missing that as a key component…how do you “come down” from this experience and learn that you have to find a way to heal yourself and once again make yourself a priority, instead of immediately–like I did–finding a substitute for my parents, because those instincts were so intense–now I’m also intense as hell…and feel irresponsible if I’m not razor-focused on a problem to be solved or nurturing someone in pain, but still doing that in balance with my own well-being.
ShaneJune 12th, 2016 at 4:47 AM
Wow. Honest. You could write a book on this. Being honest with ourselves is the most critical part of healing and the most difficult.
CookieDecember 8th, 2015 at 7:27 PM
Hospice even at home is horrible. My love went through the worst last two weeks ever after his battle with pancreatic cancer.after his last visit to his doctorwr were told he had at most 3 months.( We had at home hospice and they were great. Meds delivered no questions when he passed they helped ).Two weeks later he died. The most horrible two weeks of my entire life.having to med up someone, limit food,water as this caused more discomfort. Throwing up blood death rattle,washing him, having to help him walk, hearing him call out our names help me, him trying to get up and giving him more meds to calm him for he was like 60 pounds and if he fell in middle of the night would have died in a hospital instead of home.I was strong for him. But now have images I wish would stop haunting me
ShaneJune 12th, 2016 at 4:52 AM
Cookie love yourself. Seek support to see what you have done to ease his suffering and love yourself. It can heal with competent trauma support. I found it hard on my own and I’m trained to do this for others. I had to seek help.
JackieJanuary 9th, 2016 at 1:36 PM
The opening paragraph paints such a serene and idyllic picture of palliative caregiving and then the article proposes that sudden death or accidents may cause PTSD. You need to expand your awareness. Caregiving to a loved one and watching them slowly or quickly ewaxh their passing is one of the most heartbreaking and traumatic experiences of a lifetime. Yes. It can also be a blessing. But to exclude it from inclusion in this conversation is a disservice.
AndrewOctober 1st, 2016 at 8:13 PM
PTSD in palliative care is certainly a valid entity. This is separate from grief, bereavement or complicated grief. Although not triggered by the stereotypical things such as wars or MVA’s for example, witnessing a loved ones journey towards the last breath can be traumatic. Interesting research, for example from Wilbur et al for example (Wilbur, S., Meyer, H., Baker, M., Smiarowski, K., Suarez, C., Ames, D., & Rubin, R. (2015). Dance for Veterans: A complementary health program for veterans with serious mental illness. Arts and Health. 7(2) 96-108.) have used dance in veterans with PTSD, I wonder if the same approach could be used in palliative care? Fostering a sense of community, engagement and helping individuals heal? Does anyone else have opinions about this?
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