Lived Experience Forum

[scruffypuffball]

@Zeroserotonin 

Mum and I had an infection in March.  It was rhinovirus.  It tipped her a-fib into permanent, her heart was 150bpm, by the time she got to emergency she had multi organ failure.  Started to recover in the wards.  On day four she had a stroke.  Paralyzed on one side.  Bed ridden.  90yo. Went to rehab.  Not much recovery.  Caught pneumonia.  Now possible covid, waiting for test result.  I am achy with nausea, vomiting and I think I have covid too.  The hospital did not warn us there were cases and I saw her the past few days.  I know there is risk but I needed to see her, wore N95.  I could have avoided it if they had told me.  They are short staffed with covid outbreak.  She fell off her bed last night and landed on her face.  Is now bruised.  As she is classified as terminal, no treatment or xrays.  I had to ask them to test her for covid to see if I need a test too.  I am heartbroken.  Lost dad last year.  I have a history of abuse and cptsd.  It is too much.

@ClockFaceI have been reading about your struggles and I can relate.  I am glad some things went well with you lately.  I hope for everyone here and for myself as well.  I need something to turn around.

@LostAngelthanks for your posts on self care.  they were so comforting these hard times.

[tyme]

I am so sorry to hear what has been happening for you recently @scruffypuffball . I hear the potential shock and grief through your post,

As a community here at SANE, i want you to know that you are not alone. You have us here to listen to you, to sit with you, and to be with you through this immensely challenging time.

Have you been in contact with services such as Griefline? 

Griefline 1300 845 745 https://griefline.org.au/

Please take care. We look forward to hearing from you.

[Eve7]

Hi @scruffypuffball  I am so sorry you are going through such trauma right now.

I’m not sure what else to say other than I’m only a tag away if you ever need someone to listen.

Lots of love 🩵💙🩵

[ClockFace]

@scruffypuffball 

Holy crap your poor Mum. Thats terrrible. Just because shes terminal doesnt mean she shouldnt be cared for and in as much comfort as possible. 

[Owlunar]

Hi @scruffypuffball 

I just read your post and a bit of your background and I understand - you are having a really hard time at the moment - I do get it - this is really rough.

One grief on top of another really hurts and you have a really chaotic background and apparently nowhere else to turn - it must feel so scary and lonely for you.

We can be on hand here to support you - it may not feel like much - we care though.

I think waiting for someone to die is the hardest thing - you know it will happen but not when - and your mother seems to be really and seriously ill.

You are right - you need your parents no matter what your age - both of my parents have passed - it take time - you will go through grief and this is really tough.

Try ringing Grief Line - they are really helpful.

I am sending my best wishes and thinking of you.

💖

Owlunar

[scruffypuffball]

@Owlunar @ClockFace @Eve7 @tyme @Zeroserotonin @LostAngel 

test came back positive for mum, the hospital called me (actually it is a rehab place the hospital runs, so full of elderly people) she is dying as I type.  I need to get pcr tested.  covid is a beast, but I already knew that as I follow the science.  I wish people would mask up so it does not end up in hospitals, its not like we can avoid going there.  I am devastated.  She had a hard life and deserved better.  I tried so hard to care for her to give her a dignified life and a dignified end. I cant even go and say goodbye as I dont want to risk more exposure there, I already have symptoms.  They will organise to face time if possible. Goddamn.

[Owlunar]

That is so tough @scruffypuffball 

I couldn't go to my aunt's funeral interstate during the omicron stage of covid - so I know it's really hard facing end-of-life issues with this virus. My aunt was a friend - a good friend - and not much older than I am.

Of course you want your mother to die with dignity - she deserves that and so do you - this must be a terribly dark time for you and yes - I do know and I do understand.

From what I gather your mother is the only person you have in your life now - the last person you feel safe and comfortable with - and this is a very lonely path you are on.

There really is nothing I can say to make it easier for you - only that I have had experiences of my own - during covid too - and before that - like "been-there-done-that" stuff - so I get it - I truly do.

It's a stark reminder to all of us that covid is still about - and something we have to live around in our lives - 

We care here - I wish there was more I could do - I am holding your hand in spirit - this is really tough.

Still sending my best thoughts

Owlunar

[LostAngel]

Hello @scruffypuffball I felt quite sad for you when reading this , I cant imagine in particular Having to say goodbyes over facetime very sad for you to have to deal with as I do feel and Im very sure others also would feel the need to be right there with their loved ones , thankfully in my dads case I was with him as he passed as was a majority of his immediate family ,it didnt lessen the trauma but felt like the right and best thing to be present ,this was however pre covid times, a few family members I sadly wasnt present with at their time of passing ,my nan but I was quite young when she passed so it was most likely for the best not to have to see her pass would have been too painful , there was also my grandmother who passed peacefully however again I wasnt present ,my Aunt who passed ,Sadly wasnt with her at the exact time eather ,but made a point of visiting her as much as possible before she passed ,I think one of the saddest things is being seperated from those we love when they need us to be with them ,hopefully you are continueing to take care ,it souds like an awfull lot to deal with ,being unwell with covid and particulary being departed from your mum during this time, 🤗please try to forgive yourself ,your doing the best you can with a very sad and difficult situation, wishing you all the very best care ,LostAngel 

[LostAngel]

I apologise for any spelling mistakes sometimes my brain thinks faster than my fingers can type

[scruffypuffball]

thanks for the message @LostAngel i really appreciate it.  My pcr test came back negative, which is weird as I did have symptoms, I am feeling a bit better now.  I will test again next week.  I still dont feel comfortable seeing her.  They did call me tonight to ask if I was going to visit, I said not when I am not 100%.  I cannot face time as my phone is old, so I will ask them to put a phone in her ear and I can say goodbye that way.  I took 2 months off work to be with her every day, up to 5 hrs a day, sometimes twice a day knowing the next covid wave will hit and I predicted this would happen as I follow the science.  She was due to be transferred to a nursing home yesterday but covid hit the ward first.  The wave is surging as we speak and it is a good idea to mask up.  The N95 I wore (3M aura 9320A) saved me from a worse outcome.