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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The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Hollis

    July 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.

  • Lisa

    October 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.

  • casey

    January 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.

  • Barrie

    April 2nd, 2017 at 8:13 AM

    When I first went to a counselor in an attempt to help myself after caring for 4 family members dying with terminal diagnosis in a very short time, I was dismissed and told it was only for those returning for war. I was noticing I had the same symptoms as a 20 year, long-term, hands-on family care giver. At that point, I felt very alone and having to study and help myself. Shortly after that I began to experience four tough health challenges of my own and felt my spirit was missing, no matter how hard I tried to work to convince myself otherwise. I am not looking for blame or excuses, just help to glue my life back together again.

  • Katie

    February 6th, 2020 at 8:17 AM

    I knew it was coming, but the flashbacks of my Mom suffering, and in pain are quite strong. You think you are ready for it to come and you will be ok, but this little demon comes for you every so often and it will take your breath away.

  • Sherbear

    February 6th, 2020 at 2:54 PM

    For the last 10 years of his life my husband was a quadriplegic from a rare 17-yr disease battle that began when he was only 48 years old. I was his sole caregiver with 2 young children to finish raising and all financial support including medical expenses on my shoulders. I was grateful for the strength and perseverence God gave me because I adored my husband and had 38 years with my best friend before I lost him 3 years ago. We figured things out with respect to care and mobility issues over the years winning many battles that would have broken most people. His last year of life was spent in horrific pain. He wound up calling hospice and telling them that he loved his family and didn’t want to leave his wife and children, but he couldn’t take the pain any longer. He told them he was going to stop eating and drinking and asked them to make him comfortable. I had to agree to this, for his sake and it ripped me apart. He was gone by the morning of the 6th day with his last words to me the night before muttering “uv u” in response to me telling him over and over “I love you”. Half our 38 years together was so full of life. We were busy, productive and blessed with 2 beautiful children. His disease began when our son was only 3 years old. When I have a fond memory and there were so many, I invariably fall back to sadness over all the things he endured for so long and how he had to ultimately leave us. I may smile for a minute thinking of his humor and beautiful smile and then the deep devestation comes. It is more than difficult not remember the saddest times. Today, I keep super busy with work, exercise, singing lessons, etc. to keep away from the enevitable rabbit hole. When I do fall into it, I try and remind myself how blessed I was he and I found each other because we each married our best friend with true, unconditional love prevailing through the good times and the horribly bad times.

  • Julie

    February 7th, 2020 at 4:48 PM

    First time on this site, and so happy to come upon your few lines! So very true for me, also. My mother died one year ago March 10. It’s so hard to live with the ghosts… missing her is so much simpler than all the other stuff. Going on VK in 2 days to be with her elder sister, my aunt. She’s 97, each visit may be the last. She has difficulty talking about mom, but she values our connection and the connection it enables her to feel with her sister. Thanks for the cathartic moments. I really must begin preparation to go out of town. Maybe I’ll find something you’ve posted in the future.

  • harry

    July 2nd, 2013 at 1:42 PM

    had an uncle who was bed-ridden for over a decade before he 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

    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

    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.

  • Shane

    June 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.

  • Barrie

    April 19th, 2017 at 1:42 PM

    Please forgive me, but getting care for your emotions and grief is great. In my area they can charge anywhere from $90 tp $150 or more per hour, maybe even more. If a former care giver is not functioning well, just surviving financially can be a serious concern. I recommending talking with a counselor who has had this experience, otherwise it is possible for them to do more damage than help. A judgmental attitude at this point in your life is not good. I recommend reading the book “Boundaries,” it really helped me to sort things out. Best wishes to all who struggle with this. Be kind to yourselves. Sometimes we treat others with greater kindness than we treat ourselves.

  • Barrie

    April 2nd, 2017 at 8:19 AM

    My brother died in my home from a progressive debilitating diagnosis that lasted over 20 years. As a dedicated care giver, this can wear one down in so many ways, including grieving for what you have lost in the normal development and relationship-building in your own life. Every emotion is involved: sadness, guilt, fear, anger at the medical system, being on an emotional roller coaster with the ill loved one, misunderstanding and/or lack of involvement of other close family members. When my brother died, hospice left that early morning at 12:10 AM. There I was, as a caregiver, alone, numb, writing his obituary and trying to find the tracks in a grassy field for the derailed purpose of my last 16 years. The loneliness was both isolating and depressing. If you have not been through this, it can be hard to understand. Please, don’t be so quick to judge care givers until you have walked miles in their shoes, and you may someday.

  • Sherbear

    November 5th, 2017 at 9:09 AM

    Sherbear and Little Sher was what my husband of 38 years called me who I lost this year at age 64 after a battling the rare auto-immune disease NMO that started 17 years before. We were blessed to have found a true and deeply abiding love for each other when we met and spent 16 years together before having our two children. We were everything to each other and our kids say the know true love exists from watching their Dad and I. When they were little they lived in a fun, loving lighthearted household but that changed when there incredible, sweet and hyper father was losing his ability to walk suffering numbness, pain and paralysis. I began my long fight to ensure everything would work out fine no matter what we had to face. I had to see a half-full glass everyday to keep moving forward for my family instead of laying in bed and grieving for what was happening to us. Where would that get my family? My sweetheart suffered 2 to 3 attacks per year since his onset in 2000 with hospital stays for weeks, inpatient rehab for months and a misdiagnosis of MS that lasted 8 years while his disease went untreated. My ulitimate disbelief in the MS diagnosis came early from reading and seeing what was happening to Ken. This resulted in me battling the medical profession to listen to me with egotistical neurologists repeatedly dismissing my questions. It wasn’t happening to them. Seven years of battling attacks resulted paraplegia and within the next year quadriplegia took him back into the hospital – Oh God not his arms. Finally a new attending physician agreed that it wasn’t MS and did the blood test announced by the Mayo clinic for NMO/Devic’s disease 4 years ago with headlines “Doctors stress this is not MS”. I fought to keep our family together and functioning hoping our kids would not be scarred, but they loved him so. Thus, most of their young lives (now only 20 and 22) were spent worrying about someone they adored over and over and over again. I was his sole caregiver and financial support for the family leaving a 20-year corporate CPA career for a more flexible job as a financial advisor so I could take care of him and the kids. I moved my 6’3″ husband to and from his chair myself, setting my alarm to get up and turn him 2 to 3 times every night for the past 10 years. I took care of washing all urine bags, changing condom catheters, digitally assisting to get his bowels to move, fixing broken parts in his power chairs myself, etc. I didn’t want my kids involved in any of this side of our life. He and I developed a routine and our love grew even more with his right arm and hand restored through wonderful plasma pharesis the only treatment that finally kept NMO attacks at bay. So he was able to do things from his power chair and he was a hyper person so that was another blessing we had to be grateful for. Ultimately, his pain became intolerable due to so many years of paralysis, we searched for solutions the last 2 years with a last treatment backfiring and instead of helping sending his pain further into the stratosphere. He spent his last 9 months in agony. I would see my always smiling husband in tears and hear him screaming and I could do nothing. I could no longer find answers or ways to make things work out. He and I struggled with calling in hospice because we couldn’t imagine not being together. He hated laying in a bed, so when he finally called Hospice telling him he couldn’t take the pain anymore, he said he was going to stop eating and drinking and asked them to make him comfortable. I had to agree and asked them to help him die as quickly as possible when I couldn’t imagine my life without him. I felt like I was being ripped in half. He died on the sixth day and I can’t tell you how many times during those days, I wanted to feed him to keep him with me but I didn’t. They had him medicated, but when he woke up he would tell me how beautiful I was and sometimes cry saying he wasn’t ready to leave me. I miss him more than I can bear and am pretty sure I am experiencing traumatic grief and probably PTSD. I keep seeing visions of his last 9 months of pain after that treatment and when he was dying. Sometimes the good memories come in, but those just make me long for him. People don’t realize that when you fight something so long and win so many battles to keep your family together and moving forward as best as possible, you can’t help but wonder if you could have done something yet again. It’s horrible, I can assure you. When people say “I remember he was sick a long time.” it bothers me so much. It’s like it makes his death okay in their mind. None of what happened to my husband was okay and I didn’t allow myself to grieve for what he and I had lost all those years so I would remain strong and positive for my family. All those years of hiding my pain and not looking at the half-empty glass came crushing in this year. If I didn’t have my children who love and need me in their lives, I would have laid down with my darling because we were meant to be together always. Needless to say, I feel empty and the prospect of living another potentially 30 years or more without him is still overwhelming 9 months after his death. I guess I would just submit that battling long illnesses can create warriors and sometimes the bravest warriors can become the most wounded.

  • MissDee

    July 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.

  • Shane

    June 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.

  • Pam

    September 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 Anne

    January 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 M

    July 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.

  • Shane

    June 12th, 2016 at 4:42 AM

    Amen. Self care is critical to survival in this business.

  • Kris

    November 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.

  • Shane

    June 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.

  • Cookie

    December 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

  • Shane

    June 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.

  • Natasha

    April 18th, 2017 at 2:03 AM

    I understand so much of what you just said. I quit my job in South Carolina and went to Waco, TX to take care of my father when he was diagnosed with pancreatic cancer that had already spread to his liver. They gave him a 3-4 months to live. He died in just under one. Watching him suffer was THE hardest thing ever. The last week I never slept for more than 15-20 minutes at a time because his pain was so bad that I was giving him liquid morphine that often. Hearing my father, who was one of the strongest men I have even known, screaming at me to help him because of the pain still messes with me. It has been almost a year now and I still have nightmares a few times a week where he is screaming in pain and begging me for his morphine, but when I grab the bottle it is empty and I can’t get in touch with his hospice team.

  • Jackie

    January 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.

  • Andrew

    October 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?

  • Leanne W

    November 21st, 2016 at 12:33 AM

    Thank you all for your comments, this was very insightful for me. I lost my Mom to cancer a year ago, after a brave and difficult 3 year battle. She spent her final 2 months first in hospital and then Palliative care. During her time in hospital it was so touch and go that I refused to leave her side and spent time with her around the clock, refusing to sleep when I was on watch. My brother and I took turns spelling each other off, but I didn’t sleep really for more than a couple of hours at a time for weeks. The rare nights when I wasn’t at the hospital, I could still hear the monitors and machines when I closed my eyes. After she passed, I felt completely lost. My identity as caregiver had ended and I didn’t know who I was supposed to be anymore. I sank into a deep depression and finally sought help from my doctor. A year later and I am struggling with deep grief and insomnia, I still don’t feel like I have given myself permission to be off duty and to sleep, in case I’m needed. Even though I logically understand that she’s gone, the hard wiring doesn’t just go stop when the caregiving ends.

  • melvin

    April 13th, 2017 at 10:52 AM

    Everyone react different. For me seen my wife dying of cancer, wich at first begun as
    breast cancer then developed to her skin like
    leprosy spreding to her body, limphatic
    nodules, internal organs. She was only 34,
    seen her pain and suffering for two years. A
    caregiver can be witness of more than just one traumatic event related to his/her dying love one. Its been 4 years since she died and
    I have not recovered at all. Caregiver PTSD is

  • Clay

    April 25th, 2017 at 7:25 PM

    Hi, my name is Clay. At this moment I have been a recovering caregiver for 11 months, 25 days and just over 16 hours. Yes, it is that time. For those that I trigger, I am sorry. Overview of story, girlfriend of 25 years, also our age difference, multiple hospital stays, some serious, sleep apnea, chronic smoker, lung cancer, stereotactic radiation surgery, year and a quarter cancer free in February 2016, March 2016 UTI, treatment Gentimyacin, side effect neuromylitis, sent home by local ER three days in a row. Day 2 T4/T5 paralysis, 3 foley . Told follow up with regular Dr, see neurologist. Day 6 neurologist, admitted, never home again. Steroids, Vanderbilt, treatment,pneumonia, CO2 levels, local hospice then reg room, hope, had to physically prevent her daughter from feeding ice on thick liquid diet, barred from hospital for 4 days, condition worse, last four days, sleeping next to me holding on to my wrist. Overview…
    Me, PTSD, panic attacks, flash backs, confusion, depression, survivors guilt. I write my thoughts down in bumper sticker form.
    25 years, I do not recognize or understand the world I live in.
    I cannot see the top of the hole she left in my soul.
    I cry for what she still wanted.
    Knowing that it is happening to you does not change the fact that it is happening to you.

  • Ed

    May 20th, 2017 at 5:25 PM

    I’ve been circling this page for awhile. My darling wife passed away at home in my care Nov 2015 from aggressive stage 4 cervical cancer. Diagnosed April 2015. She was 39, myself 40 and her daughter 11, who I was a ‘dad’ to for 7 yrs. I resigned my job sept 2015 to be f/T carer for her at home. 2 weeks after my wife passed away, her daughter was relocated by her dad (not there much prior) to his apartment. The cat went mad and had to go to a friend’s house. I was on anti deps for 4 mnths in 2016. My wife’s parents were both deceased and any relatives overseas. Everything was dependant on myself. I now find I have awful anxiety & adjustment issues, maybe ptsd, I don’t know. My family dissolved and savings smashed, I now struggle to maintain an existence. There were just so facets in the tragedy. I’m a positive guy but it all just nailed me.

  • Ed

    May 20th, 2017 at 5:36 PM

    Post script . I did have grief counseling early 2016 however it did little to alleviate. The dear child had counseling too, ongoing support from school /services. My wife and I were soulmates, twins, 1111 , everything. After her funeral I felt the solar connection separate, a sickening feeling, just as it was when we first met and we joined in the solar. It spun and locked in clockwise and after her death spun & unlocked anti clockwise. I hope I haven’t upset anyone with my posts. I’m just really struggling

  • layne

    May 22nd, 2017 at 10:45 PM

    I had a pre-existing traumatic background. I found out in 2008 that my mom had dementia, and in 2010 we had her medically arrested and put in a care facility. She deteriorated so quickly and by April 2011 had passed away. It was horrendous to go through this. Part of my complex PTSD is because of interpersonal trauma from her. Watching her go into a vegetative state until her last breath was more than I could handle and I’ve been very dissociated since then and so depressed. It’s especially troublesome because we found out from her brain autopsy that she had a genetic form of dementia related to ALS. I’m too scared to go for testing and am always being triggered by ALS and dementia commercials. I see a therapist but can hardly stand talking about my mom. Anyway, I think therapists need to consider whether patients were put in various situations like I was, with prior trauma, and post death fear.

  • Mindy L

    May 20th, 2020 at 12:23 PM

    My mother was diagnosed with Stage 4 Metastatic Breast Cancer on June 24th 2016! We were shocked, as her mammogram just 1.5 years
    prior was clear. She developed thrush in her mouth, and then once in the palliative wing, she developed a bedsore on her tailbone. I begged for a scan to see if the daily 45 minute ambulance drives for her chemotherapy and radiation were actually working. We were told it was to “Slow it down, not stop or get rid of”, and we understood that. Mid September 2016, I had asked her palliative doctor about the scans, and his response was “If she is here within the next 4 weeks, but sadly I do not think she will be”, that he would do it. Her oncologist was not happy that was his response. So, on October 17th 2016 he came in and asked me to go out into the hallway, I went out to speak to him, he asked if I still wanted the scans as it had been 4 weeks, and of course I had said yes! On October 18th she went for her scan, and on October 20th the results were in. Her mets had shrunk by over 50% AND they were sending her home.
    Now, we are setting up all of her medical needs for home. She is expected to be home on October 25th- YAY! She walked that day for the 1st time in 3 months.

    October 21st, she was supposed to head to chemo, but wasn’t feeling to good. She decided to go anyways. Later that day, she spiked a fever, and within 24 hours, she died!!!

    I WAS her caregiver! I was there with her from 9 a.m. every morning after dropping my kids off at school, I’d leave at 3 p.m. to pick up my kids, drop them off at home with my 17 year old son, and I wouldn’t return home until 10 p.m. or sometimes not until the next day, as i’d sleep in her hospital room on the recliner! I prepared myself, but I NEVER prepared myself for watching her die the way she did. Just lastnight, I woke sweating , having a nightmare of her death AGAIN, and it’s been over 3 years!

    PTSD happens, regardless of the situation!

  • Amy

    May 1st, 2021 at 6:14 AM

    Thank you all for your comments. It helps to know i’m not alone.

  • julia

    May 11th, 2021 at 7:58 AM

    My 55 year old Mom endured a slow & agonizing death from cancer mets to bone. My sister & I alternated care-giving duties for 5 months. Every time I left Mom, I thought there’s no way she can get worse & continue to live. But she did. Mom prayed to god to end her pain & let her die. Hospice was awful & did little else than provide durable medical equipment & ineffective meds. Last month, my sister died from cancer mets to bone. Her caregiver sent a text saying she was admitted to hospice due to pain. I was shocked thinking this is going to be a repeat of Mom’s 5 month ordeal. But thank you auto-correct, it should have said panic. Thankfully her pain was well controlled. Due to covid I hadn’t seen her in over a year. I delayed the 6 hour drive to visit & missed her passing. Now my niece won’t communicate with me because I “abandoned” her mother. 27 years later & I still get overly emotional when any living creature experiences suffering & fear. I cry easily. Is this PTSD after all this time?

  • Paula

    February 8th, 2022 at 1:45 PM

    I just lost my husband due to dialysis complications and wounds. He marched on through 15 years dialysis an aortic valve and mitral valve replacement in the last 4 years. He was so strong and large during our 25 years together and became so weak. On the 4th of July during our picnic, he became sick and needed to be transported to the hospital on the 5th. Over the next 4 months we watched him deteriorate and become helpless, lost a leg and suffered beyond belief. 4 hospitals, 3 rehabs and such a feeling of helplessness for me and my boys. i can’t get the visions out of my head. His care was terrible and so much pain could have been avoided from the bad care of the rehabs. I have seeked to give his wound supplies and diabetes supplies and etc to people in need. It has helped but i am having such emotional struggle. I know time will help and I have to be strong for my sons.

  • Tristan

    April 12th, 2022 at 5:59 PM

    I was the palliative care caregiver for my mum who passed from Esophageal cancer. It was the most traumatic experience of my life. I will not go in to specifics but I believed she would just eventually just fade away and pass but in reality it was watching a loved one choke and asphyxiate to death over several days. I guess If Covid was not rampant at the time a nurse may of been on call to help me but that was not the case.
    Yes I did get very special moments with my mum before she passed, But doing palliative care at home were you have to inject Morphine and Methadone, Clonazepam, and various other medications in the final hours of a loved one life was at the time just something that had to be done. And did not affect me until the days, weeks and months after my mum passed the memories, flash backs and panic attacks I am left with can be triggered by something out of the blue. And are quite debilitating,

  • Lucid

    April 25th, 2022 at 8:36 AM

    My dad died mid December 2021. I cared for him for three years. And was doing all the organising before that. The bottom line is I hated it and I wanted him to die. It was beyond stressful even though I had loads of help. My life simply dissapeared under constant stress and organising Rotas finding carers plus the occasional shitstorm. I still jump when my phone rings and gag at the smell of disinfectant. I realise I have PTSD and am seeking treatment. Don’t under estimate the effect it has. I am paralysed with fear that I will do this to my kids. Well I won’t. I hope all of us can get the help we need and deserve.

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