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PTSD and Prolonged Grief in Caregivers


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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  • Hollis July 2nd, 2013 at 1:09 PM #1

    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.

  • harry July 2nd, 2013 at 1:42 PM #2

    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 Haszard July 2nd, 2013 at 9:55 PM #3

    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

  • Betsy July 3rd, 2013 at 4:20 AM #4

    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.

  • MissDee July 4th, 2013 at 6:45 AM #5

    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.

  • Mary Anne January 18th, 2014 at 8:14 AM #6

    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 M July 22nd, 2014 at 9:36 AM #7

    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.

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