Friday, 25 August 2017

Over the last couple of months we have began visiting a lot of families in their homes to offer support to them and one of the things that every one of them has said, and we to have experienced, is how physically painful grief is. 

I have heard it described recently as an 'aching from the tips of my toes to the ends of my hair', and a physical ache in their arms which they feel could only be alleviated by cradling their baby.

If you say that to someone who has not experienced a loss they find it hard to understand. 
'How can grief make you actually hurt' is something that bereaved families will have heard.
I think I would have also felt like that prior to having experienced a loss myself.

Love really does hurt - and the loss of a baby or child is one of the most painful.

Over recent years medics and researchers have started to look into the physical and chemical reactions experienced by grieving people, and with the new technology available in scanning they have been able to show that the part of the brain responsible for processing physical pain also deals with emotional pain.

They have also shown that in the same way that a person having long term effects from a physical injury such as chronic pain, the pain felt by a grieving person may never totally go away, referring to it as 'heartbreak'.

When people talk about being brokenhearted it can actually feel like your heart is going to give up and I have heard it described as feeling as if someone was trying to pull it out of their chest. 
It may also feel as if someone is pressing down on your chest or your heart is leaking. 
When people feel like this they often do not tell others because they feel like they will think they are going 'crazy'or they won't understand.

It has been called 'Complex Grief' by doctors, which relates to when the physical pain from grief carries on for a prolonged period of time with no relief from it. Complex grief has been found to occur in up to 10% of bereaved people. Whilst this is quite a high number I think that it will probably be higher than that. A lot of people never seek help so they will not be included in the research.

Grief can also lead on to many other physical conditions which adds to the difficulty already being experienced by the bereaved person. Lots of people describe experiencing stomach problems/pain or always having a headache, which makes dealing with day to day activities almost impossible.

"Can you die from a broken heart?" 

Well a cardiologist has come forward and said YES. 

He has said that there is an increased risk of dying in the 6 months after a bereavement and it is more likely in men. He explained this by saying that following a bereavement the stress and anxiety felt can produce a specific hormone that can lead to some people experiencing heart attacks and strokes as well as being more likely to be involved in accidents.

When you look at all these things that people can go through after a loss it makes you realise how important it is to have the right help and support out there at the time it is needed. 

We know this is true from all the families we have met since setting up Charlies-Angel-Centre and from our own personal experiences. 

If people were able to access the support they need when they needed it there would be much fewer of them requiring doctors intervention which surely makes sense in today's culture of Nhs cuts.

One day the people in charge of making the decisions about the services available must see that prevention is better than cure and that putting adequate funding into areas highlighted as being underfunded is the only sensible solution.

If you know someone who is struggling with grief please remember that the physical symptoms they are experiencing are real and they need your support and help to get through it. That could be just spending time with them or offering to go shopping for them but it could also involve you making the decision to seek extra external support for them.

Grief hurts and it can hurt for years and years, never rush someone through their grief they are taking it at the pace that is right for them, just be there for them.

Friday, 18 August 2017

Parental grief is overwhelming; there is nothing that can prepare a parent for its enormity or devastation; parental grief never ends but only change in intensity and manner of expression; parental grief affects the head, the heart,  and the spirit.

For parents, the death of a child means coming to terms with untold emptiness and deep emotional hurt. Immediately after the death, some parents may even find it impossible to express grief at all as many experience a period of shock and numbness. All newly bereaved parents must find ways to get through, not over, their grief to go on with their lives. Each is forced to continue life’s journey in an individual manner.

Parental bereavement often brings with it a sense of despair, a sense that life is not worth living, a sense of disarray and of utter and complete confusion. At times, the parent’s pain may seem so severe and his/her energy and desire to live so lacking that there is uncertainty about survival. 

Some bereaved parents feel that it is not right for them to live when their child has died. Others feel that they have failed at parenting and somehow they should have found a way to keep the child from dying, 

Grieving parents should learn to be compassionate, gentle, and patient with themselves and each other. Grief is an emotionally devastating experience; grief is work and demands much patience, understanding, effort, and energy.

Parental grief can and often does involve a vast array of conflicting emotions and responses including shock and numbness, intense sadness and pain, depression, and often feelings of total confusion and disorganisation. Sometimes, parents may not even seem sure of who they are and may feel as if they have lost an integral part of their very being. At other times, parents may feel that what happened was a myth or an illusion or that they were having a nightmare.

Each bereaved parent must be allowed to mourn in his/her own way and time frame. Each person’s grief is unique, even that of family members facing the same loss. Bereaved parents shouldn’t expect or try to follow a specific or prescribed pattern for grief or worry if they seem out of sync with their partner or other grieving parents

Bereaved parents need to know that others may minimise or misunderstand their grief. Many don’t understand the power, depth, intensity, or duration of parental grief, especially after the death of a very young child. In some instances, bereaved parents are even ignored because some individuals are not able to deal with the tragedy. They find the thought of a child’s death too hard, too Inexplicable, or too threatening. Many simply don’t know what to say or do and so don’t say or do anything.

Probably the most important step for parents in their grief journey is to allow themselves to heal. Parents need to come to understand that healing doesn’t mean forgetting. They need to be good to themselves and absolve themselves from guilt. They should not be afraid to let grief loosen its grip on them when the time comes. Easing away from intense grief may sometimes cause pain, fear, and guilt for a while, but eventually, it usually allows parents to come to a new and more peaceful place in their journey. Allowing grief’s place to become a lesser one does not mean abandoning the child who died.

In the end parents must heal themselves. It was their baby; it is their loss; it is their grief. They need to gain closure, to experience release, to look to their new future.

Friday, 11 August 2017

As a charity we are always looking at different ways we can support the families who come to us following the death of a baby or child whether that loss is through a miscarriage, stillbirth, soon after birth, compassionate induction or neonatal.

Recently we have been getting many more telephone and email calls from families following a miscarriage or multiple miscarriages. 

This seems to be an area that is not always given the attention it needs. Often women will say to us how they feel that others almost dismiss their loss saying things such as "At least it was an early loss", "your lucky as you haven't had the time to get to know your baby" or "you can try again". Whilst many of the people saying these things probably meant it as a comforting thing, ask any family experiencing this and they will tell you a very different story. There is also the common misconception that the earlier the loss the less there is to grieve. 

Another area that is so difficult for families to talk about is the issue of compassionate induction, this is also called medical termination. 
There is still a negative connotation around the word 'termination' and many see this as the couple not wanting the baby and making the decision to get rid of it. 

This is so far from the actual truth. 

The couples who have had to come to the agonising decision to end their baby's suffering, through illness or congenital abnormalities, have done so through many hours of talking with professionals and family. They have made the decision out of love for their baby.
Many families tell us that they will often tell people that they have had a miscarriage as they are afraid of people judging them. They are then not only having to deal with the loss of their baby but they are also having to lie about what happened which can be very traumatic for them.
There needs to be so much more education and discussions about compassionate induction so that families are not left feeling alone and isolated in their grief.

From the moment the lady takes the pregnancy test and sees the positive result she has become a mummy.

Her and her partner will start to see their future and make plans for where their child fits in to it all. Their life has changed forever and they will have already started to get excited about telling their family and friends their news. 
Each week that passes is another week of getting to understand your body and your baby inside. 
The first scan comes and this is yet another chance for the parents to meet their baby, no matter how small they are. Seeing that little heart beat on the screen is a very emotional feeling and makes everything feel more real.

To then have this all taken away from you is so cruel, unfair and totally devastating. 
The father is also affected by the loss of their baby, a lot of people will often feel that the dad doesn't feel it as deeply as the mum. This is not true. 
Dad's grieve just as deeply as the mum. However they are often made to feel like they have to be the strong one and support the lady. Whilst the lady really does need support so does the man.

I once read a saying that I think is true, 'The family that grieve together heal together.' 

It doesn't matter how early a loss may occur or under what circumstances, it is still the families baby. They have had a part of their future taken away and the plans they had began to make are all now just a dream. 

To then have people belittle or undervalue your loss or underestimate the impact it will have on your life can make your grief feel even harder.

We have spoken with many families that have said how they have felt under pressure to be 'normal' again or have had friends/family react in a way that makes them feel like they should 'be over it' by now. This can put so much pressure on them and make them feel that they are wrong to grieve.

No one should ever feel that they cannot grieve and no one should ever tell a family how long they can grieve. 
Grief is a personal experience and is different in every person. There should never be a time limit on grief as this can then make the family feel pressured or even feel like they are wrong to be still grieving.

There have been many improvements made to the provision of support for grieving people over the years but the families that have lost a baby seem to be lagging behind in the support network.

We have recently been in touch with a nurse who works on a gynaecology ward in Leeds who works with many families on a day to day basis who are going through a miscarriage. The staff want to make changes to the care they can give/offer the people they look after. They are already providing a vital service but they know that the support these families need does not disappear once they leave the hospital. 

We are hoping that we will be able to collaborate in the near future to make an impact on the support these families need. Our aim is to have care and support in place for families upon leaving hospital until whenever they are ready for us to withdraw. 

As this service develops and becomes available we will keep you informed. We see this as such an important service that so many families could access. 
The national statistics say that 1 in 5 pregnancies will end in miscarriage, so surely it makes sense to have a support network in place to help these families through their loss.

Friday, 4 August 2017

I am so proud to be part of the amazing charity Charlies Angel Centre Foundation.

Four years ago I honestly don't think any of us could have imagined what we would have achieved in such a relatively short time. 
Not one of us had ever had any experience in setting up a charity let alone how to run one. We went into it totally unaware of everything it takes to start up and sustain a charitable organisation. Naively we thought we would be able to complete a few forms and answer a few questions and that would be it - A charity.

We can look back now and laugh at what we imagined it would be.

It is definitely not an easy thing to do and it causes lots of headaches, sleepless nights and even some tears but I would not go back and change any of it. We have all changed throughout the last 4 and a half years and I feel it has definitely been for the better. Despite all the difficulties encountered we have not given up, in fact we have become more determined and stubborn.

Our knowledge and understanding of how the Nhs works and how difficult it is to make a change has grown immensely. Through our stubbornness and constant questioning we have managed to get ourselves in on many different important National Health Service meetings. Initially we found them very daunting and often felt confused by all the jargon used but we were never deterred. We would go away and do our own research to make sure we totally understood what was being discussed.
Now we go along to these meetings feeling like equals, we are confident in our ability to get over our concerns and questions.

Now we work alongside many health professionals and have become work colleagues. We work in collaboration with several departments to ensure that families do not slip through the net and are given the support they need. We have even been asked for our input on leaflets that are given out from the hospitals. This really shows to me what a huge step we have made and what a huge impact we are now having.

We often get told by friends of the families or the families themselves that we support of the difference we are making and how the support we have given has enabled them/their friends to keep going. It is when we hear things like that that we realise what a massive ripple Charlie has made in the provision of bereavement support.

Initially everyone involved with the charity was from the family but over the years this has changed. 
There are now more and more people wanting to become involved with the work we do and several have now come on board as trustees. Some have started out as families we were supporting and have made the decision that they too wanted to help other bereaved families at the darkest points in their lives. These people are amazing and have helped us in so many ways.

The charity has almost become like an extended family.

We are a group of people that have come together in a group, and it is a group that no one ever wants to be a part of but once you are in it your life changes forever. The families we have helped or are supporting come from all walks of life but we all have one thing in common - GRIEF.
Everyone who comes along all have their own area of expertise they bring to the table. Some are amazing fundraisers, others are great at getting companies to donate goods or services but one thing we all have in common is the passion to see a change in the provision of bereavement support after the loss of a baby or child.

2017 has been an awesome year for us so far and it doesn't look like it will be slowing down. This shows us how much a need there is for charity like ours. We hope you stay with us as we continue to move forward getting bigger and bigger.

Charlie Arthur Curtis inspired the charity and his name and story will continue to be spread across the country and the world. 
What an amazing achievement and legacy for someone so young. 

Charlie will always be a very special little boy to us but he has also become someone that is special to so many more.