Greif like Gremlins

I have decided that my grief is like a Gremlin, a lot of the time it is a reflection of the love I have for those that I have lost. I welcome that. I love them so don't want them to be forgotten, like a cuddly toy to a child, some days I may leave them on my bed or a shelf, other days I need to keep them physically close to me.  If you were a teen in the 80's as I was, then you will know what happens when a cute looking Gremlin turns bad.  If they get wet, are exposed to bright light or fed after midnight they turn into the most horrid evil little monsters.

Sometimes my grief turns bad, the Gremlins in my head start to tease and taunt me, I no longer have the people in my life that can tell me that the bad feelings I get are not real reflections of how they thought about me.  So today I have decided to write some of these things down.  I don't need comments or sympathy, I just need to put some of them on paper (so to speak) so that I can acknowledge their existence. So here goes:

"Your mum took her own life so she could be with your dad and youngest (favourite) daughter."

"You were never good enough"

"You took on your niece to try and please others not to do the best for her"

"When are you going to get over your past?"

"You obviously like to wallow in grief"

"Just stop feeling sorry for yourself"

"You should be grateful to not be juggling ageing parents as your children leave home"

"look what a crap parent you have been"

There are many more but that is quite enough for today.  Until now I would cope with all these things in my head by counting the hours til 6pm so that I could obliterate these gremlins with alcohol or sleep (or both).  That time has passed, I can acknowledge that this is a bad way to continue regularly coping with these thoughts. That is not to say there will be times when that will still happen.  Another coping mechanism I use is to keep busy, this has it's limits too, my poor broken body can't keep doing that.  So for today the only thing I can do is be, I know deep down that the things these Gremlins say to me are not true, but I also know they still feel real now and again.  So if I see you in real life then you might notice I'm a bit shut down, I cannot do everything without the crutches of alcohol or busyness.  Thank you in advance to those of you that know me well and will still be there when I reemerge, it could be later today or next week, who knows?

Much love xxxx

What a decade!

To say that the last 10 years has been eventful sounds dramatic, but I mean it, it really has been:

December 2008 we had to cancel my 40th birthday trip to Prague with my husband as we had my 36 year old sister's funeral the day after my birthday.

January 2009 we help move my (maternal side) grand-mother to the midlands and sell her house in Surrey.  She was moved into a home as her dementia was deteriorating after a brief physical illness.

May 2009 we took in my 12 year old niece to live with us as my parents could no longer manage her behaviour.  My children at the time were 8 and 9 1/2 years old.  Over the next two years there were legal implications that resulted from her father completely disowning her which led to tribunals and court cases.

July 2009 I had surgery on both of my knees (the result of my rheumatoid and oesteo arthritis).

January 2010 my 65 year old father had a stroke, he was at this time the main carer for my mother who was suffering from a complete mental breakdown following the death of my sister and not being able to manage her grand daughter.

March 2010 we finally started to get some mental health support for our niece as her school work and behaviour were all deteriorating very quickly.

April 2010 my father appeared to have physically recovered from his stroke however it left a significant cognitive impairment, which turned this incredibly laid back and un flustered man to become a persistent worrier.  

September 2010 my Dad managed to convince my mum to downsize to a bigger house!!!!! (Why did we not question this move more).they were still in the same town in the midlands a little further away from my brother.  He was convinced that getting her out of a house that needed work doing to it and was full of memories of my sister would do her good.  It didn't.

February 2011 my niece made her first suicide attempt, we woke up to the sound of her being ill in the night and managed to find out what she had taken and get her to hospital in time.

May 2011 we could no longer manage my nieces behaviour and she was taken into the care of social services.  After several failed foster placements (some only managing 1 day) she was admitted to a psychiatric hospital. For the next two years she was in and out of various hospitals before being admitted long term to a unit 200 miles away from us. I also had to cope with her accusing my father of sexually abusing her (something she did later retract) but fractured my relationship with her and him non the less.

October 2011 my father unexpectedly died from an dissected aortic aneurysm. My mothers mental health deteriorated to the point of having to be hospitalised near us (she was staying with us at the time).

January 2012 we moved my mum into rented accommodation near us on the south coast.  She needed constant mental health service support over the proceeding year.

February 2012 my Grandmother died.

June 2012 I had to give up my part time job as I couldn't cope mentally or physically with home life demands.

January 2013 my mother succeeded in taking her own life.

2014 was quite uneventful except for the continued caring for my niece.  I was still the only person that kept in regular contact with her ( sometimes up to 4 phone calls a day from her mental health unit).

May 2015 we noticed that my youngest daughter was not eating much.  By the time we realised it was serious she was already dangerously under weight. We were immediately offered help which was difficult to accept at the beginning having had so many negative experiences with my niece.

September 2016 my daughter was admitted to a mental health eating disorder unit.  She stayed here for almost 6 months.

March 2017 my eldest child then 17 told me that they knew they were trans gender - I knew they were troubled but didn't realise this was the case.  We were asked not to tell anyone except the gp so that we could get a gender clinic referral.

May 2017 my youngest daughter was discharged and a week later started her GCSE exams at school. She managed to pass them all except one and was able to enrol into sixth form college.

September 2017 we were told by our vet that our dear dog Pippin was very ill and might just have weeks left not months.  We were so blessed to have her for another 9 months after this.

May 2018 our world was completely rocked to the core.  We discovered a deception that meant contact could no longer be kept with my niece. This story belongs to my youngest daughter if and when she decides to tell the world.

 

June 2018 my eldest daughter finally felt able to publicly transition to female, she had chosen her new name and was ready in her self to go forwards.  We also lost my darling dog, Pippin.

September 2018 we finally had  NHS appointment for my eldest at the gender clinic, we had already started on treatment privately and are still waiting on the NHS to take over this.

October 2018 my eldest daughter moved to York to start her degree course in maths.

Which takes us to my birthday this year, yes it was the big 50.  I had a lovely intimate party with just a few friends ( I don't cope well with big gatherings anymore).  I was totally spoilt rotten by friends and my small family.  We had got our puppy just a week before hand called Merry by my youngest  and my eldest daughter was home from university (which she is loving).

I felt very much that God was saying it was time to put this decade behind me.  Within a week of my 50's my youngest daughter was accepted into a London music conservatoire to study saxophone performance.  She also got a distinction in her Grade 8 exam.  To top even that we then found she had been awarded a reasonably substantial scholarship which would help to fund a London placement!

So I am excited about 2019, I am learning to leave the feeling of dread of what will come next behind me.  There is still a long way to go for healing for all four of us but it actually now feels as though this healing is attainable and there actually might be a time of great blessing from all these bad times.

Essential Pain

A friend who is travelling along her own grief journey posted this video about Grief on facebook.  Its an animation by an amazing lady called Megan Devine, you can find much more about her and her story over on her website Refuge in Grief. 

I am sure I have shared before about the complexities of grief.  My journey into trying to understand and feel grief started after the death of my 36 year old sister in 2008.  In fact this blog was started just a few weeks after at the beginning of 2009 when I realised that something inside me was just 'not right'!

I grew up in an atmosphere where I was not encouraged (in fact actually discouraged) to feel emotions.  My mum's life had been a struggle for survival in a world where she felt (and was regularly told in actions and words) she did not belong and her 'feelings' were not valid.  No real surprise then that in her parenting of me there was something missing!!

The grief experiences that I was having were so alien it took a long time and eventually some specialist help to try and understand why I reacted to situations as I did (and still do occassionaly).  Discovering that I had real emotions that affected my behaviour and relationships also made me realise that I was in dire risk of passing on my emotional numbness to my children.

As a society I'm hoping we are moving on from having 'the British Stiff Upper Lip'.  However I can see that we still have far to go in acknowledging our emotions, accepting them in order that we can then continue on our journeys of self-discovery and maturity.  That is what this video made me think about this morning.  How many times have I tried to cheer someone up when all they needed me to do was be along side them.  How many times have I tried to encourage others to 'look on the bright side'? For those that know me well, I think you would agree that I am generally a 'sunny side up' person, my glass is usually half full not half empty.  This is a part of my nature and I really would not like to have to give it up.  It always has and I would like to think that it always will be a saving Grace on more than the odd occassion, helping me to keep my sanity.  What I do need to remember though is that when others are experiencing deep sadness, it is not my job to try and pull them out of it.  They have just as much right to feel their own emotions, just as I have mine.

After my mum died by suicide in 2013, I remember crying out in those raw messy moments following her last breath "I tried so hard to make her life worth living" to the deaf ears of my now estranged brother. The cold flat truth is, we can not make people feel the emotions we want them to feel.  I am now learning that in fact by allowing those we love to express, wrangle and own their feelings and emotions is the most precious (and helpful) gift we can be a part of. 

This video talks about acknowledgement, if you try and acknowledge how someone is feeling you may discover that you are not understanding them at all. That's also okay and might lead to a conversation, moment of better understanding, or even helping someone identify how they are feeling.

So  how can we practically help those who are grieving? I would like to add just a few suggestions of my own that I have felt to be helpful, it's okay to say:

• "I'm so sorry you feel so bad right now".  
• "Is there anything I can do to help you right this moment, a hug, a distraction, a walk, etc" - make sure you only offer what you can give!
• "Would you like to talk?"
• "Would you like some company?"
• "Can I bring a meal over for you?" - as long as you make it clear that you are not going to come over and sit and watch them eat it, reassure them it can be put in the fridge or freezer to eat when they are ready.

Of course, these things can be so hard to put into practise when we cannot predict how a person may react to us. This is the risk we have to take if we really want to show how much they mean to us.

Another story I found some years ago was a middle eastern tale -

A man was out with friends when he entered a river and started to panic, his friends kept reaching out to him shouting "give me your hand".  The troubled friend could not do this and the situation got even more dangerous.  A wise man saw a commotion and went to see what was going on.  He heard these friends shouting at their friend and told them to be quiet.  He reached out his hand and said to the troubled man "Take my hand". The troubled man took the hand offered to him and he was safe.  The moral of the story is, don't ask a drowning/troubled man to GIVE you anything, instead offer them something to TAKE.

Thanks for reading my ramblings, have you had any experiences that have helped you through emotionally tough times?

Jane x

Decisions and Priorities.

For the last week my mind has been mulling over a situation that is causing me a lot of angst.  For those that do not know, my mother took her own life a year last February.  She had been struggling with her mental health since the death of my sister 4 years prior to her death.  She then lost her soul mate, my dad just over a year prior to her death.  This caused a critical psychotic episode which meant she had to be hospitalised.  As she was staying with me 200 miles from 'home' when this happened she was hospitalised near me to.  After three months she was well enough for discharge and she was encouraged by the hospital staff to stay in the area so that she could have continuity of service.

The mum that was discharged was quite different from the one that had gone in.  For the first time in a long time she was talking about her very troubled, abused and traumatic life as a war baby in post war Germany. This life continued right up until she met and married  my dad at the age of 18.  She was treating herself to new clothes (and bought me things when it was not a special occasion - this never used to happen).  She was going swimming with me regularly and often persuaded me to get on and go even when I was low.  She went away on holiday with a friend.  She was making plans of things she wanted to do.  She rented a bungalow with an overgrown garden and was in her element sorting it out and making a vegetable plot.  This state remained for about 7 or 8 months.

She had booked to go away again in the October/November (with the same friend to the same place), she had hoped this would help her over the horrid first anniversary of my dad dying and the anniversary of my sister's passing.  By the time she went I had already noticed she was not so good.  She was far more anxious about what she would wear and couldn't make decisions about buying new things for the holiday.  She then had the trauma of discovering when she got back that her landlord had put the bungalow on the market without even telling her.

Within weeks of returning she told me that she wanted to die and was struggling to stay alive.  Having not heard her talk about the community mental health team that had been looking after her and knowing that her Community Psychiatric Nurse (cpn) had moved on, the only course of action I could think of was to contact the GP.  They were great, they saw her straight away and were horrified at the state of her and the fact that she appeared to have fallen through the net with the community service.  By this time she was asking to be readmitted to hospital.  It is only now with hindsight that I can see how big a deal this was.  Her time in hospital had not been a 'good' experience, she had not been happy to be there.  Therefore asking to be admitted was probably a very difficult decision for her to have made.  The GP got onto the community team and arranged for someone to come out that afternoon (it was Friday).  I made sure I stayed with her all the time.

When the CPN ( one I had never met or had any contact with) arrived, she informed me that she had taken over mums care and I should have contacted them not the GP.  However when I informed her that I had no idea that they were still involved as no-one had contacted me since the old cpn told me he was leaving, she was at least apologetic that she had not been in touch with me.  She then proceeded to tell my mum that she could not be admitted back to hospital, the unit she had been in was now a dementia unit and there were no beds.  A discussion had been had before she came out to visit with the community psychiatrist and her medication had been increased.  Medication was one area that I had refused to get involved with - I have enough trouble controlling my own!

By December there had been no improvement, if anything she was slowly going more and more into a depressive stupor.  She had almost stopped going swimming with me.  I was having to go and fetch her to come round for tea, whereas before she had happily walked around.  I had found her somewhere to live - a lovely place just around the corner from my home.  She was anxious about buying it, but was doing the purchase herself along with the estate agent and solicitor.  I had to ask my brother to invite mum to his for Christmas to give me a break as now my caring role was becoming a daily activity.  He was very shocked to see how downhill she had gone.

At the end of January she had a review with her CPN, I had spoken to the cpn before the meeting to inform her that mum wasn't washing and was spending most of her time in bed.  During the review, mum was very quiet but voiced her anxiety about the move and life in general.

Then February arrived, a date for completion on the property was made, everything was set for exchange.  Then out of the blue I could not get hold of her.  After eventually having to break into her property I found her conscious but unresponsive and a pile of medication packaging next to her.  After being blue lighted to the hospital it took about 6 hours before I was finally informed that she was not going survive.  I was told it could take several days for her to die, thankfully she only lasted until the following lunch time.

Because of the nature of her death we have had to have a coroners inquest.  The coroners clerk regularly called and updated me on the process of the inquest as reports came in (or didn't in the case of the community services).  I was then given a date in December to attend and all the reports they had received were sent to me to read before the court appearance.  However I noticed that there was still no report from the community mental health services.  I said this to the coroners clerk when we arrived, he then went and discussed this with the coroner.  It was then decided by the coroner that the case should be adjourned as it was vital for a full report from the community team to be there as they were the only ones with regular contact with mum.


Last week I finally had another letter from the coroners office to say a new date had been set for next week and they also attached a report from the mental health team.  This was no ordinary report, it was a critical incident report which they had, had to complete for the health trust.  It was dated MARCH 2013, just a month after mum had died.  So I am left wondering WHY?????, why wasn't I informed that the report had been done, why had they not sent the report back when information was first requested from them by the coroner.  Why was so much of the information contradictory and in some places wrong.  Why was the appendix that should have been attached with a time line on it of their interventions with mum missing.  Why was there not mention of the change in CPN.  To say I was furious does not give justice to how I immediately felt.  Grief and anger came clashing into mind.  One week on, thankfully I am becoming calmer about it all.

So now, what do I do?  I decided to try and get hold of the person that wrote the report or one of the people on the management team that were named on the report.  A call was made 5 days ago, I was told I would be called back and that still has not happened.

How much time do I invest in this?  I am concerned that I am going to get to the inquest hearing next week and get too emotional to voice any of the above whys to the coroner.  Will he be interested anyway?  Trying to discern the right course of action to take has been exhausting.  Fortunately I have been able to talk through with my counsellor this process and she has helped me to look at how it is all affecting me.

Nothing I can do can bring my mum back.  However if I do nothing about these concerns and I keep them to myself, it is going to feel like I'm keeping some sort of secret inside of me.  This secret will never go away, I might find I can box it up and put it on a shelf in my memory, but it will never go away and as my mums experience has shown me, sometimes those secrets can manifest decades later when the mind comes under pressure.

So I have written this all down.  That is my starting point.  Next I need to sit down with the horrid report and mark clearly the bits of it that are wrong or that I do not understand (contradictions).  I am then planning to email the coroners clerk on monday with all my questions, so that I am not able to voice them during the inquest they can still be brought up.  I think I have also made peace with myself that if the coroner decides that no further action is warranted, I have to accept this.  However if this is the case I can still write to the health trust and let them know how viewing that report almost a year after it was written caused me too much upset.  I can also let them know my concerns about the details of the report.

If on the other hand the coroner thinks it needs further investigation, I can leave this to him to do.  It is not something I can do.  I may have quite a strong moral and ethical stance on injustice, but I do need to look after myself as well.  I still have a young family to look after, I still have a niece in an adolescent mental health unit, for whom I considered next of kin even though she is under the care of social services.  I need someone else to fight this battle for me if indeed it needs fighting.  Hopefully I can start to let go of all this unrest inside of me.  I am very much hoping that by this time next week I will be at peace with all the decisions that have been made.

Dear Mum.

So I should be saying Happy 67th Birthday today!  But I am not am I, you ensured you stayed 66 forever - that is an extreme way of not getting anymore grey hairs!

I cannot imagine how you thought suicide would be the answer. 

I cannot imagine how you could have thought that being dead would have had anything but a negative effect on your two remaining children and all your grandchildren.

For me it has been the ultimate punch in the face, you wanted to be with your other daughter and not me.

Did you have any awareness that this is how it would leave me feeling?  I hope not!  That way I can fantasise that this is just my own interpretation of how I am feeling, not how you were feeling.

There are days when I want to slap you round the face and remind you that you chose to have children - so why did you bring me up feeling as though it was my own fault that I existed?????

Then there are days when my heart bleeds for what you had to go through as a child, and for the support that you did not get from family, friends or counsellors.

I know I am so very fortunate.  I have an amazing husband, and beautiful loving children.  There are friends surrounding us that are there to support and hold us when we need it.  To leave us be when we need that.  And to make us smile and laugh when we need that.

I do hope seeing me striving to break the mould has not made you sad.  I do hope that you can see that we are trying to nurture individuality and freedom for our children.  Yes  this means there are times when I have to let my children 'Show off', but who are they harming?  Yesterday when A was walking down the street holding her arms out walking like a catwalk model, I could feel you cringing besides me and chastising me for letting her do it.  But she was having fun, she was playing, she was using her imagination to live out fantasies.  She was enjoying herself!  She knew this was an extra special treat - time with me.

There are only three memories that I have of you and me spending time just the two of us, maybe more will come back to me with time.

One was off us shopping together when I was probably 12 or so, but we were shopping for you.  I remember you constantly telling me this.  I had known that is why you were going but had still wanted to come with you with the hope that you might treat me to something.  You didn't, you just got cross that I wanted to look at things that were not what you were looking for.

The next was when I took you for lunch when you were visiting your mum in Kingston.  It must have been when she was in hospital, before Sally died as otherwise she would have come with us.  That I remember being a really pleasant pub lunch.

The last memory is of your birthday present last year.  Do you remember I got us tickets to see a west end show - something you had never done.  But you hated the whole experience.  Even telling me this while we were eating our lunch out in a lovely restaurant.  That hurt me so much.

So today is a bittersweet day for me.  There is a part of me relieved that I no longer feel responsible for trying to make life worth living ( yes I know that I did not have to do this, but it is how I felt).  Then there is the other part that had so hoped that living closer to each other would mean spending more quality time together, maybe even getting to know and respect each other more as we grew older.  For this I grieve.

Suicide is Painless?

A few months ago I watched my mother die a slow and painful death (amazingly it only took 24 hours after I found her, it could have been a lot longer) after taking a huge overdose of paracetamol.  Why she chose this method when there were plenty of other prescription drugs she could have used that would of been much quicker is beyond my comprehension.

Why she chose to do it at all is also still really beyond my comprehension.  I am still waiting for the coroners reports to arrive with the views of the mental health professionals that had been dealing with her.  However I am quite certain that there probably won't be any answers to my questions within them.

I heard this week of another suicide, that of a young man who had been plagued by mental illness.  Is the relief that he ached for the same as what my mother did?

My feelings on the whole debacle change from moment to moment.  I have been very angry, I have felt very worthless, numb, confused, sad, relieved and many many more emotions.

At the moment I am really feeling that maybe it was not the result of a mental health 'issue'.  She had a life that was plagued by horrific experiences for the first 17 years.  These had scarred her so deeply that she was never able to accept any help in trying to come to terms with them.  Her last 5 years were also enveloped in great sadness after loosing her youngest daughter and her beloved husband.  She just did not want to be alive without them.

So was there anything that could have been done to prevent her from taking the action that she did?  I still have to believe not at the moment - partly because this is the only way I can stop myself from taking any blame for her actions ( I know this is a little selfish but hey - I still have a family to be there for).  At the moment I really don't think anyone else could have done anything to help her - she did not want it - in fact she very actively refused to engage with any help that was offered.

So my experience is that suicide is not painless for the person who takes their life, and most certainly is not painless for those that have to face the trauma of finding them and then dealing with the grief that inevitably follows.