Traumatic Grief

I have written a chapter in my book Grief Demystified on the variants of maladaptive, or “complicated” grief and found this blog post earlier whilst scrolling through Twitter: Zuka’s Legacy

I thought this post was so well written from a first person narrative and provides a different perspective on the specific issue of a traumatic response to a bereavement.  Not all deaths, whether traumatic or not will result in “trauma” but there can be a traumatic reaction following a death.

This post was written by a bereaved mother after her son suicided and she has graciously consented to let me re-blog this:

PTSD is not the person refusing to let go of the past
but the past refusing to let go of the person
Post traumatic stress disorder or PTSD is a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event. For the full diagnostic criteria please click here.
Basically when a person has been through trauma, certain events (called triggers) can cause a person to have anxiety, anxiety attacks, or fear. They may avoid situations that may trigger memories, people with PTSD may have nightmares related to the event. It can cause depression, irritability, detachment from others, problems sleeping and problems concentrating..
PTSD is not always an exact replay of the actual event, it’s sometimes a replay of the emotions you felt during the event such as fear, helplessness and sadness (Alice Cariv)

I have had PTSD in the past concerning a bad car accident and a violent relationship with my children’s father but nothing as bad as Zuka’s suicide. When I was in the hospital I was diagnosed with PTSD, I was not surprised, I don’t think you can go through something like this and not have PTSD. I had nightmares every night until I went to the hospital and they gave me a medication to help with nightmares. A couple of incidents have happened that caused pretty major anxiety attacks.

The first one happened the first time we went out after Zuka’s death, We went with very understanding friends for support. It was really hard going out in public and never knowing what make you break down crying. We had a nice dinner and everyone was heading out but I decided to run to the bathroom real quick. On the way out the heavy wooden door banged behind me….Immediately I threw my hands up in front of my face, I was so afraid and felt like I was in shock, I started crying and ran out of there. PTSD can be embarrassing, all the way home I wondered what people who witnessed that anxiety attack must have been thinking.

The next incident occurred when I was at a get together and a guest (who had no idea what happened) brought in his new shot gun to show everyone, I was nervous but when he racked it, I did the same thing, threw my hands up, I was so scared, I started getting out of my chair to run out but my friend jumped up and yelled at them to take the gun out. I think they thought I was afraid of guns, I tried to explain and I was stuttering. It was a very traumatic experience for me, though no one is at fault!

I have had several other incidents, watching movies, loud noises, I just never know what will bring on flashbacks or anxiety attacks. The bad dreams haven’t been about the exact incident but they are about fear and loss.

If you have been through or witnessed a traumatic event that causes reoccurring bad dreams, fear, anxiety, avoidance of situation you may find fear inducing you may have PTSD
Here are some things that may help
Seeking professional help from a counselor, psychiatrist or doctor
Meditation and practice self soothing
Avoid drugs and alcohol which may make the issue worse
Talk about it to a supportive friend or family member
Medication; anti-anxiety medication may help
Take care of yourself, get enough sleep, try to eat healthy meals
Journal about the incident that causes the anxiety attack
be easy on yourself and do not feel responsible for an anxiety attack, it’s not something you can control.
Do some sort of art work or craft to soothe yourself
Here are 20 unexpected coping techniques for PTSD

Check out Kati Morton’s Youtube she has several videos on PTSD and many other mental health videos
Do you have questions, comments or anything you want to share, you can leave a comment below or email me at zukaslegacy@gmail.com

 

2018 International Conference on Stillbirth, SIDS, and Baby Survival

I’ve just returned from this conference and wanted to summarise and share some of the information that’s relevant to the baby loss community, and those that that support them.  I tweeted during the conference on the talks I attended and a very short summary of my perception of their talks can be found on my feed @thegriefgeek.  These speakers can be contacted or followed directly, so whilst the overall themes are included, I have not included their talks in detail in my summary below.

Firstly, this conference was dedicated to the prevention of baby loss in the first instance; sharing information on what is known about reducing the risks of stillbirth and SIDS (cot death). Professor Alexander Heazell explained that there are things that expectant mothers can do on a daily basis to decrease their risk. One of them is to sleep on their side. It is estimated that, if all pregnant women in the UK went to sleep on their side in the third trimester, around 130 babies’ lives would be saved annually. Further information was given on not smoking or taking drugs during pregnancy, attending all ante natal appointments, and alerting a medical professional if there is any change in baby’s movements.

With regards to SIDS deaths, the research suggests that it there is a statistically significant increase in child death if a parent smokes and has baby in bed with them to sleep. Baby should also not sleep in a bed with a parent if they have consumed alcohol.

Secondly, the conference shared information and best practice on supporting bereaved parents after these types of losses. The over-riding themes were:

• “No More Silence”
• “Community Support”
• “Listen”
• “Education”
At the International Stillbirth Conference in Cork last year, it was evident that bereavement care should be consistent for all baby loss parents. There was also a concern that medical professionals weren’t receiving enough or adequate (i.e. modern grief theory) training. Whilst the linear stages of grief myth still pervade, it’s important that we educate professionals and the bereaved alike; that even if there are identifiable commonalities to grief, they do not follow a predetermined pattern. We also know a whole lot more about grief from the past 30 years of research! (Read my book! 😊)
There were three further items that I’d like to mention:
1. One of the outputs of my PhD research is the need for an all-encompassing word for all baby deaths. One of the reasons for this was highlighted at this conference: that those who have lost a baby whilst around 20-24 weeks gestation may be categorised has having a “miscarriage” rather than “stillbirth”. This has lots of implications including the issuance of a death certificate (generally; yes for a stillbirth, no for a miscarriage) and the recognition by society of the significance of the loss. A gestation of that age will result in active labour and the birth of a baby, to have that classified as a “miscarriage” causes grief implications for the parents and can be devastating if their social support is absent due to this categorisation. Secondly, we have seen from research that some individuals identify as “parents” as soon as the pregnancy is confirmed. Seeing the ultrasound scans confirms evidence of a “baby” and subsequent parenthood. This can be the realisation or continuation of all of their future hopes and dreams as a family. To some expectant parents, the loss of a self-identified “baby” (foetus, embryo, or baby) is significant and we believe that all baby loss parents who are affected in this way should receive adequate bereavement understanding and support. We have introduced the word “gestnatal” to our research to encompass all embryonic, foetal, and baby deaths from conception to 28 post birth so that we can focus on the impact of the loss and minimise societal hierarchies of grief (i.e. the ‘ranking’ of importance of the loss as dictated by someone else). We know from research that grief is not related to the gestational age of a developing baby.
2. Another theme that was mentioned during the conference is that of gender differences. In some societies men still believe that they are expected to ‘man up’ or be ‘blokey’. There can also be a perception that men are unaffected because the mother is the one that carried the baby and laboured. However, grief in men following a gestnatal death is highly individualised and as such, they may not receive adequate support. Some men are not as affected as women, but some are and that depends on how attached the man was to the baby. In all cases there is only one way to find out: ask and listen! Another point to note is that men can grieve in an instrumental style and women in an intuitive way, both are grieving in the right way for them. Grieving differently does not mean they aren’t grieving or ‘doing it wrong’.
3. Another PhD Researcher, Livia Sani, gave a very interesting talk on the use of YouTube videos for memorialising stillborn babies. Used mainly in the U.S.A., YouTube videos are increasingly being utilised for public sharing of grief and obtaining peer and social support. It is mainly (70%) mothers who are curating the videos that are on average 5 minutes long, they start with the pregnancy story, notable in colour, with the identity creation of “parenthood” and subsequently tell the story post loss, usually in black and white or in a less colourful way. The videos are usually accompanied by music and religiosity. It appears that the videos “originate from an emotional need of the bereaved parent to be able to declare the existence of their child and their grief, keeping [their] memory alive.”
4. Another interesting presentation was a joint project between Margaret Evans (Paediatric Pathologist), Nicola Welsh (CEO Sands-Lothian) and Kate George (Illustrator). Following stillbirths and SIDS deaths the bereaved parents are asked if they would like a post mortem (autopsy) in some cases. Understanding the delicacy of this situation, the team have produced a very gentle animated film explaining the process and how to obtain more information. This film can be used by anyone and is openly accessible here:
https://sands-lothians.org.uk/post-mortem-animation/
In summary, the key messages for supporting the bereaved were 1. The importance of peer and societal support 2. The importance of medical professionals being trained to communicate and treat the baby loss parents with dignity and knowledge 3. To enact policies and procedures that reduce preventable deaths. I am pleased to report that evidence was produced that showed that an incredible amount of work has been done in the past 12 months to further these goals thanks to a multitude of committed and caring professionals.
If you have any questions or comments on any of the content here please email me at: thegriefgeek@yahoo.com
If you would like any further information on: modern grief theory, what to say to the bereaved (and not to say), what complicated grief is, why the death of a child is different, how men and women may grieve differently, how to support grieving children, the implications of the internet for grieving/memorialisation/digital legacy, how to support yourself if you are supporting the bereaved you might like to read my book “Grief Demystified: An Introduction”. An accessible, research-based book written without jargon for those supporting the bereaved and the bereaved themselves. It is available from various booksellers and Amazon worldwide.
Further support can be found from:
http://www.sands.org.uk (stillbirth, neonatal death)
http://www.sudc.org.uk (Sudden unexplained death of a child)
http://www.simbacharity.org.uk (Miscarriage, stillbirth, baby deaths in Scotland)
http://www.pregnancylossdirectory.com (A U.S site signposting to miscarriage, stillbirth and baby loss support organisations in the various states, Canada, Australia, and New Zealand)

As always, please do not use any of this blog without my consent.
All Rights Reserved Caroline Lloyd 2018

Miscarriage: Claiming the Narrative

It is with kind permission that I’m able to recreate the following:

Back in 1983, I found myself in an office toilet cubicle miscarrying a 14 week old foetus.  I had no idea I was pregnant because I was using birth control.  I had visited the doctor four times in the preceding two months, and each examination and consultation had resulted in a prescription for increasingly powerful pain killers.  I was given no ‘diagnosis’ or ‘treatment’ for whatever was ailing me.  Just a piece of paper for pills and sent away to just ‘get on with it’.  Despite the painkillers, towards the end, the pain was unbearable and the blood was uncontainable.

I walked to my workplace from the bus stop with blood running down my legs, thankfully it was winter, so I was wearing a long, heavy, dark coloured skirt.  I went straight to the ladies’ room.  The fact that I was in work, doubled over in pain, in shock, and possibly denial, meant that I just flushed my baby away and went to my desk to work.  This was pre-internet, so I returned to the doctor’s surgery several days later, was examined, and it was confirmed that I’d had a miscarriage.  I was sent on my way with a different prescription for contraceptive pills.

I was dazed and confused and wasn’t sure what to think or feel; it was an unplanned and unkown pregnancy.  When I finally confided in a friend a few months later, I was told it was a “blessing in disguise” because I didn’t have to choose between “ruining my life by having a baby at 18″ or having an abortion.  At that time, within my cultural environment, this was the narrative.  I was also told it was just a bunch of cells.”

I’m observing bereaved narratives on the internet over thirty years later as a PhD researcher, and whilst there are similar stories to the above that can be found, there has been a noticeable change.  Advances in technology have contributed to changing the landscape; home pregnancy tests allow women to find out they are pregnant almost immediately after an absent period.  With ultrasound scans available to prospective mothers as early as 6 weeks’ gestation, it is now common to see the growing foetus in utero.  These tangible factors allow prospective parents to see their baby; to formulate future dreams of what they will look like, what they will be like and what their lives may encompass, from a very early gestational age.  These medical advances, along with the internet (particularly social media), has changed the narrative in Western cultures almost entirely.

From an occurrence that was historically perceived to be the loss of a ‘bunch of cells’ and the common platitude of “you can always try again”, it is now common to post ultrasound scans on social media pages with the ensuing proclamations and public announcements of parenthood. Following a miscarriage, some of these women are now posting photos of their miscarried foetus’ as evidence of their loss, and as such, there is a growing movement to allow miscarriages to be registered as a birth.  The internet has opened up a dialogue where these women can claim their identities as bereaved mothers.  Within their bodies and their imaginations, these children were real, they existed, and their death is impactful.  Social media has enabled them to form support groups online, particularly within Facebook, and there is impactful peer support on Twitter such as #BabyLossHour.

Clearly not all women are online, not all women grieve a miscarriage, not all women welcome the news of an unplanned pregnancy.  But there is something empowering about claiming your own narrative and having peer support available, whatever that narrative may be.

As always, this content is copyrighted and cannot be reproduced without my permission.

Death & the Maiden Guest Blog

Not only does Caroline Lloyd refers to Death and the Maiden as glamorous and cool (thank you Caroline!) she shares her personal and professional journey of grief. Experiences that became the motivation behind her new book: Grief Demystified. The book she wrote that she so desperately wanted when she had disenfranchised grief and had no idea that that was even a thing.

via The Grief Geek — Death & the Maiden

To read my guest blog on the Death and the Maiden website, please click on the link above, or here:

The Grief Geek

 

 

When grief is complicated but it is not complicated grief…

This is a letter written by a grieving daughter who would like to remain anonymous. She’s asked me to post this in the hope that it will help someone else in a similar situation.

Not all relationships are straight forward and ‘ideal’.  Ambiguous or complicated relationships can (but don’t always) lead to ambiguous or complicated grieving.  This is not the same as complicated grief which is different.

If you’d like to know more about why grief is so individualistic, or what complicated grief is, or have any other questions, take a look at my new book “Grief Demystified: An Introduction”:

Grief Demystified on Amazon

“Dear ‘Dad’,
I’m pretty confident you’ll be wondering why the inverted commas. Of the few communications I’ve ever received from you over the past 50 years, you have always referred to yourself as ‘dad’. My opinion is that the label has responsibilities and expectations that you have never demonstrated, so you are not worthy of that title.

Your daddy’s girl was left bewildered and devastated when you left without telling anyone when I was 6 years old. I thought I’d done something wrong and I was being punished. No-one told me any different. No-one talked about you, but I do remember your mother chasing you down the street with a bread knife threatening to kill you… that image pretty much sums up the memories of my childhood: violence, shouting, fear, neglect, suffering, confusion. I found out many years later, that you had left after coming home and finding my mother on the floor having taken an overdose of pills. I guess she couldn’t take your drunk or drugged up violence and the trips to the hospital any more.

I tried to get to know you when I was a teenager; I even emigrated to the country you were living in to do so. In hindsight, I was still seeking reparation for the ‘wrongdoing’ I had done that had ‘made’ you leave when I was 6. You rewarded my efforts by getting drunk every.single.night, vehemently denying everything you did that I witnessed as a child, and swinging for me with your fists. The irony of course is that to everyone else you were happy, generous and fun.

After trying and failing to build a relationship as a daughter with you, I moved countries. But you would get drunk and ring me to verbally abuse my life choices. I had sold out because I lived in America; you hated the country. I had sold out because I was the first person to go to university in the family; who did I think I was? I had sold out because I worked a lot and didn’t party like you; I was boring and ‘Americanised’. Eventually I moved and didn’t give you my phone number. After failing to build a daughter relationship with you, you wouldn’t allow me to even have an adult relationship with you.

The last time I saw you was when your beloved mother was ill, that was twenty years ago. You flew back to our home town to visit her prior to her death. I found out you were home because my mother received a phone call summoning me to a pub to see you. I went, as I always did; I never wanted a reason to feel guilty or accused of not being receptive to a relationship with you, even if it was on your dysfunctional terms.

After years of peace and quiet, you started sending me friend requests on Facebook that I kept rejecting. After a while your persistence paid off and I accepted you. But you never even say ‘happy birthday’ to me either publicly or privately.

I had to ring you 11 years ago to tell you that the grandchild you had never met was terminally ill. Your exact words are seared into my memory like branding on a farm animal, “shit, I’m having such a bad week, first an argument with my girlfriend, now this.” Your first thought was about yourself, the non-existent ‘grandfather’, you never asked about the three year old child that was dying of cancer, you never asked how your daughter was while she was watching her son die in her arms. Sadly, after 40 years of life, I didn’t expect anything else from you. That statement pretty much summed you up. I haven’t spoken to you since.

I hear that you have died. I had anticipated that at some point I would have to deal with your death and the ambiguous feelings that would arise. I was never sure how this would feel for me; would I feel nothing because we have a virtually non-existent relationship, or would I feel emotions because you gave me life? I have ambiguous feelings, which accurately reflect the ambiguous relationship we had.

They say your parents fuck you up, I would agree with that. But as an adult, you have the choice whether to maintain that status or change it. They may have given you a beaten up old car, but you sure as hell can choose to pimp that mother up. And that’s what I’ve done. So thank you for contributing to fucking me up, you provided me with an array of tools with which to understand complexities I may never have understood if I’d had two normal parents, a dog and a white picket fence.

One of those complexities is dealing with people who didn’t know you; those friends and your wife that you lied to about your past. They are sainting you online, sending condolences to the ‘family’ you never had any contact with, talking to you in ‘heaven’. Who am I to shatter their illusions?

That 6 year old girl will never understand why you didn’t love her enough to be her dad, and this 50 year old will always envy those that have a dad that loves and cares for them.

I did find a short letter you sent twenty years ago following your visit to our home town and the last time I saw you. It contained a photo of us together in that pub, and your words ‘all my love dad xxxxx’. It is the only tangible proof I have that you existed. It is the only tangible proof I have that you may have had some feelings towards me underneath that selfish persona. So, thank you for that, and for triggering some happier memories that I’ve managed to retrieve and receive comfort from.

I hope you Rest In Peace ‘Dad’, I love you now as I loved you then, because despite the pimping out, the bodywork always remains the same…”

As always, this content is copywrited and may not be used without my explicit permission.

Do as I say and not as I do…?

Today I’m hugely conflicted.

I awake to a smart phone that flashes and beeps 24 hours a day, 7 days a week with social media notifications, and bereavement alerts of one description or another.

But today is not just another day; it’s the anniversary of my nephew’s death.  So I have notifications and reminders of this fact via Facebook, emails & texts- as if I wasn’t already acutely aware of the date.

The conflict is whether I share my memories or photos, or my feelings in such a public forum.  Do I change my profile picture? Post a photo of my nephew? Post a loving memorial telling ‘the world’ how much he’s loved and never forgotten?  Or do I keep quiet, and privately remember, and treasure our short time with him, and all the joy he brought in the three and a half years he was with us?

As a bereavement support worker, I’m an advocate for being open about death, dying and bereavement; a death denying society is not a healthy one in my opinion.  Death is a natural part of life, and grieving is necessary and healthy.  But I’m not sure I want to express my thoughts and feelings in such a public way, or to people that never knew my nephew.

Which brings me here.  To a fairly private, largely anonymous forum where I can express myself to those who ‘get it’, without the platitudes, and devoid of the ‘stalkers’ who are my friends that read but don’t comment..

This is my way & you will have your way.

So this is my tribute to a beautiful child that touched our lives in so many ways.

Always loved & never forgotten 💛

 

What do you say to a bereaved person?

I’ve been asked many times what do you say to someone who has been bereaved, my advice is try not to give them platitudes.  It’s easy to say things that we think will help but can actually be quite hurtful. The following are examples of what not to say to someone who is grieving:

  1. ‘I know how you feel’ -No-one knows how anyone feels because you are not them and you are not in their body or mind. This is a simple statement to make and seems obvious but having empathy or sympathy does not mean you know how they feel.   I would suggest asking: ‘How are you feeling?’ instead. Allow them to express themselves if they choose to and respect the fact that they may not want to.
  2. ‘They are in a better place now’ – This is a contentious statement to make. Everyone has their own personal beliefs on what happens after death but even more than that, the griever wants more than anything to have that person back so this statement can be interpreted to mean that the deceased is better off out of the griever’s life. As an alternative, I would suggest you allow the griever to talk about the deceased and their life together.
  3. ‘You can always have more children’ – the last thing a parent who has lost a child will want to think about is having more children. The mere suggestion that they could have more (and potentially they may not be able to conceive again) is insulting and just about the worst thing you could say to them. To a grieving parent this statement can suggest the child that has died can be replaced. No words can express the depth of grief a parent experiences after the death of a child, the loss of their dreams for that child and their lives together so this statement can be incredibly painful and hurtful. Instead the child should be honoured and memorialised and the kindest thing you can do is to talk about the child.
  4. ‘It gets easier after X months/years’ – please see my earlier blog about the myths of the stages of grief.   The emotions experienced after a death should certainly subside with time but grief is not a linear process and time is relative; it’s a real human experience full of complex emotions, thoughts and changes in identity and roles. Life does change and evolve after a bereavement but stating there is a timeline or that it gets ‘easier’ can undermine the significance of the loss to the bereaved. Instead offer support for as long as they need it in whatever way is needed.
  5. ‘’At least….xxxx’ –This really should be taken out of our vocabulary when speaking to a bereaved person.

These are a few of the most common platitudes said to the bereaved and the reasons why they should’nt be used. There are no ‘right’ words to say and sometimes we all say things we wish we had’nt because we can’t always predict the impact of our words on someone who is feeling intense emotions. Conversely avoiding or ignoring a griever because you don’t know what to say can be equally as hurtful. Genuineness and authenticity should not be underestimated and a simple ‘how are you?’ or ‘is there anything I can do?’ can go a long way to helping a griever.

  • ‘*Update -–I wrote the above blog 8 months ago and today I heard about the death of a baby of someone I’m friendly with.  Sadly this person’s baby was born eight months ago when I wrote this and he brought joy & dreams into this family that are now totally devastated.  This is what I said ‘I have no words to say to you that are adequate…I’m so, so sorry for your loss and my heart goes out to you.  I am here for you if you ever want to chat at any time or if I can do anything.’  I will contact this person at regular intervals after the funeral to just ask ‘how are you’ or ‘is there anything I can do?’.  I hope that’s helpful.