My mum has gone
I got the call several days ago that she had declined rapidly
I thought that she had already passed when I got there
she looked exactly like my dad when I had to identify him at the chapel after he had passed
Colourless palour waxy. eyes lost within her face
mouth wide open
in a frozen state of terror
I stayed with my mum in her room all night
over 18 hours day and night with little sleep as they checked on her every two hours and every time she changed her breathing or croaked or shouting out I jumped up to check on her
She was screaming out in pain
She was crying out for God
I tried to tell her that he was with her all of the time now
She said no he is not
he is not listening
I told her that he does things in his own way
(sounds humourous - what an irony)
It was so traumatic grabbing me; hurting me; then screaming at me to go
The palliative care night nurse manager was brilliant and spent a fair bit of time talking to me explaining things.
When I told her my name she said oh you are here. She recognised my voice. She grabbed me and pulled me close to her.
She said I am sorry.
I told her that she did not have to say sorry to me.
She tried to stare into my eyes
I know that she cannot register clearly as she is in advanced stage of dementia which deteriorated rapidly.
I asked her then if she wanted to hear that I had forgiven her. She held me so tight so I told her that I had forgiven her had always loved her. Nothing would ever change that.
She let me go then.
She went back into her state of delirium or delusion.
After all of those hours watching her I let staff know that her breathing had changed which was expected as she was only on continuous pump for pain relief, sedation and nausea management.
I called them urgently as the usual signs of close approach were evident (don;t want to discuss here) they came and asked if she had grimaced. I said I dont think so she had twitched her breathing was more spaced out and laboured and different sounds. Expressive movement on her face.
They left.
my sister had just arrived and said go home have a shower some lunch then come back
I burst into tears and said that I am frightened to leave I think that she will go.
My sister said that she would call me.I would have time.
We were away no more than about 15 minutes the phone rang.My sister said that they could not find a pulse. my sister had looked at her watch
we left our lunch ran into the car drove there. back there in 5 minutes
ran to her room they were in the corridor.
I knew.
They had been telling me every day how strong I was. I had been stroking her. talking to her. watching her. staying with her.
Then I fell apart.
Why did't they listen to me.
I knew her breathing as I had been with her the most during those days.
Then someone said she is still there hold her hand.
I held her hand and kissed her hand and her forehead and talked to her. I told her she was safe and on her way to meet dad and her sister. she was finally at peace.
Then I felt as though I had nothing left within me to give to anyone.
I feel so very numb
I am dressed in her pyjamas and jumper today.
She only weighed 35 kilograms.
All I can see is a skeleton when I think of her.
I do not feel as though I have even seen her as she does not look like my mum
I do not even feel as though any of this has happened.
This is all floating around me
I am not in it.
Just observing on the outside
I have not experienced this
What an irony
My mum and sister could not accept my son having hallucinations, delusions. An unreliable diagnose given several times by several registrars during detainment all over the country.
They could not accept him in their lives and because I would not move on with mine I was judged; despised; controlled and finally not allowed to call or visit her
I wrote her cards
I sent her flowers on her birthdays
I would receive a call with an hello from mum telling me that she loved me. She did. does
Then the wind would change my sister would lash out about goodness knows what and the non contact would start all over again.
put back into my box.
no wonder i hate boxes.
people do not belong in boxes
there is not one single box that is appropriate for one single human being
every human being has the right to be themselves
no one single person has the right to stifle another or to control them
yet look around
look at the way this world is
society has become controlling
we are already robots
Advanced dementia has similarities in symptoms.
This whilst not easy to witness in anyway is still not seen as an insidious illness.
This life has so much unknown quantity that is just taken for granted by the masses.
I have not addressed this to anyone.
I perhaps am writing to myself or even my mum.
I cannot bring myself to address this to my friends on here and it is so extremely painful to write about.
It may not even be accepted.
I have written it though.
I have put some of the unknown current state of my mind into words that do not even come close to describe what I have been through.
Life and death are one full circle.
What is really in between?
I have felt for sometime now that the average person has no concept of this.
They cannot see past the human made idealism
What about what is in between each person
what is in that space
what is around each of us
what is out there beyond our knowledge
a huge unknown quantity of something far too intangible for us to even begin to comprehend
this is my current thought
sending you lots of love
