Living with Ourselves

[outlander]

hi @Sophia1 i just wanted to stop in and say hello

how are you going?

[Sophia1]

Hello dear @outlander 

I have just been writing to you on your thread safe place.

I am having to undergo further medical tests myself much to my extreme annoyance and like you am fed up.

It is what it is though.

I am about to head outside in the garden seeing as Spring is here.

It was raining earlier. Hopefully not now.

There are many very healthy looking weeds awaiting me.

Hopefully I catch you next time when I first log in, as I am stiffening up now.

😊

[outlander]

oh dear @Sophia1
i hope your tests provide some answers for you and you start to feel better soon

[Sophia1]

Content/trigger warning

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

 TW: Death

[Zoe7]

I am so sorry my dear friend @Sophia1 😥 I understand so much of what you have written. I stayed with my Nan day and night and she only passed away when there was no-one in the room. What you have done for your Mum is give her company and comfort in her final days and that is massive. The loss is great and you will have so much to deal with for a long time so I am sending you my heart and my love 💖💖💖

[Dimity]

My deepest sympathy @Sophia1 . I sat with my late father for most of his final days.

I hope you can find some consolation in reflecting on your mother's long life and the happier times  Memories can be bittersweet and grief and regrets can be unpredictable. Be gentle with yourself. You'll need to conserve your strength for the days ahead.

Take care

Dimity 

[Sophia1]

Thank you @Zoe7 @Dimity 

for letting me know that I am not judged by you for journalling my chaotic thoughts on here.

I hope that you recognised that I did not address these thoughts to anyone.

@Thyme 

Thank you

My first response for survival was to jump to the conclusion that yet again I have been judged as is my real world experience.

My innate sense of honesty and expressing of emotion now (after far too many years of dissociating and wearing a mask) has triggered unresolved issues within others within my own and extended family.

I wrote those thoughts in a state of displacement; fear; further loss and hopelessness.

I was lost myself hence the style of writing

I was unable to think clearly

I had no intention of wanting to distress anyone. The thought of my upsetting anyone brings me further self punishment as I have been judged for being myself my whole life.

I reacted when I saw the closed box of trigger warning (which I shout from the rooftops myself to put in place.)

I had mentioned irony within the content of my journalling.

There are so many conflicting thoughts and that is what grief and loss cause.

Somehow my mind told me to check my emails.

My post had not been deleted.

I had not been reprimanded.

Then I found your beautiful words of reassurance @Thyme 

allowing me to have the feeling that I am still accepted on these forums where I have made some special connections.

I am relieved that the post has not yet been removed as I  feel that it might help another who cannot feel at that level. Many people bury their feelings when unable to deal with them.

The fact that it is not under a thread entitled dealing with someone passing or something like that of course will mean that it will just sit gathering dust (ashes to ashes)

The trigger warning and indication of content is enough to allow a person to have a choice of whether to read or not.

I hope so.

I do realise that a loved one passing is such a delicate time for everyone and we all react in our own unique ways.

Unfortunately not everyone recognises this choosing to be defensive or lash out which has been my experience in real life.

You mentioned that I am not alone.

Sadly I have an overwhelming sense of being lost and alone in all of this.

I know that I have gone to my childhood safety place of separating myself from the world.

many thanks for such a gentle and caring response to me by email @Thyme 

That would have been difficult for you also.

For this I am truly thankful.

Sophia

[Sophia1]

Dear @Zoe7 

Thank you for your caring words.

I am so sorry for your personal experience and loss

I am incapable of saying any more at present as I feel so empty

Sophia

[Sophia1]

Dear @Dimity 

Thank you for your kind words

Sitting with your late father tells me that you have some understanding of nothing can prepare us for this no matter how much we tell ourselves before. @Zoe7 also

I wish I could say more

I am empty

Sophia

[Peregrinefalcon]

Hey @Sophia1

You are in our thoughts and we are all sitting with you right now 💛

No pressure to respond at all, reserve your energy for taking care of you 💛