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Dark times: Not a discussion.

RonniRonni Member Posts: 162 Pioneering
What's the point of putting minicom numbers down for deaf people when no one answers.
Many help lines dont even have one. 
So what's the point.
I'm just having a moment and well where else  to go.
So please ignore.

Last month my mother was in hospital she survived  2 infections and the  covid at 77.

I found this place after searching  for some to talk to for 2 weeks there was nothing. No one out. 

Now she in again but it bad sceptic shock 4 hours till I know if the treatment is working and even then. They nsure the got it quick enough shes at the stages where she cant breath properly and in coherent.

We not allowed to go. Couldn't get there anyway.

I remember we used to move a lot. She would just pack and go to another town. Realy wish right now I could do rhat. But I'm trapped in a place I hate.
I have to wait for my brother to send me a message via messenger. So il wait. 

So just having a moment. There no one. If she survives she be in out  of hospital. It will a some point. We havent seen each other a year. We text every day 11 and 5.

I came on to text her. I know.  It was 5 someone answered an earlier txt wasntssid theyl update me.
I just on here instead. 
Dont mind who reads.
Or ignores.
Or even deletes.

Just needed a place not to talk. There are no answers to solve this.


  • christian96christian96 Posts: 101 Member
  • AwesomelorenzoAwesomelorenzo Member Posts: 108 Connected
    Oh my god, must be terrible. I hope you mum will be okay. My granny survived sepsis at 94.
  • katho31katho31 Posts: 694 Member
    we are all so very sorry. please can we help in anyway?? stay online and dont feel you are alone, hard yes, but we will all try to help if we feel we can  :)
  • Lou67Lou67 Member Posts: 865 Pioneering
    @Ronni. So sorry to hear everything your mums going through, I had severe sepsis in 2017 I collapsed in a shop and rushed to hospital, I was really ill and in hospital for 6 weeks but I’m only telling you this so hopefully it gives you some hope, I will say a wee prayer for your mum and for you to have strength throughout this take care Ronni x
  • RonniRonni Member Posts: 162 Pioneering
  • katho31katho31 Posts: 694 Member
    prayers and best wishes here also x to cheer you up, and i dont even do the lottery, hubby does, i asked him to put 2 pound on a horse today, just gut feeling, won and horse was 20-1  :)
  • frank96frank96 Member Posts: 38 Connected
    My nana died from sepsis 2 months ago. The last time I saw her was through a window. She had onset dementia and was starting to forget thing's and I have found some comfort knowing she had a happy life and died with all her memories intact. Sadly I can't help but feel bitter towards covid restrictions/government. It took 4 days for a paramedic to come see her and take her to hospital. She was in pain with a urine infection but was complaining of back pain and I honestly believe if she had been given antibiotics sooner she may have survived. After 4 days she was taken to hospital. That was the last time I spoke to my nana. A week later she passed away, alone and confused not knowing where her family was and surrounded by NHS staff in full PPE looking like something out of ET (our local hospital was where all the expats were sent to at the start of the pandemic so they were over prepared with PPE). My grandad could not get hold of hospital staff during the week she was in the hospital nor could he get a mobile phone to her. The night she passed close relatives were allowed to say their goodbyes briefly and in full PPE. My nana 2 children and husband were by her side for 15mins the night before she died. A few hours earlier we had no idea how sick nana was. Although the staff were comforting over the phone we got the sense that they weren't aware of what was happening and possibly due to shortage of staff they were just spouting nice lines to get grandad off the phone. I don't hate myself for not going to say goodbye to Nan as she had already slipped into her forever sleep and I could never speak to her again. I hate knowing she died in such a crappy environment. No hand holding, no music. No loved ones beside her, only for 15 mins 12 hours before her death. I'm sorry I don't know why I felt the need to share it probably won't help. Just try to appreciate how much your loved ones love you and how much you love them in return. If the worst happens think of all the good times and celebrate their life and try not to think about how they died. Not going to lie I'm about to burst into years right now but I'm next to my grandad and he's watching some Napoleon documentary so I'll man up. I had a Nan for 24 years he had a wife for 60. There's worse ways to die than organ failure from sepsis. A long battle with dementia would have been very saddening, maybe COVID even worse. My advice, pop a mask on and walk into the ward. In hindsight I wish I did just that. Power the to people. Propeganda scared me from seeing my Nana and she wasn't even on a covid ward.
  • frank96frank96 Member Posts: 38 Connected
    Sorry about the rant if it seems like one I don't really know what I set out to say I just want to talk too. Nana died 2/4/20 aged 79. she was a healthy woman who lived a healthy lifestyle. A local woman who's 100+ lives off MacDonalds. She survived COVID. It's a roulette wheel of death. I hope nobody I know catches it. 
  • RonniRonni Member Posts: 162 Pioneering
    edited June 2020

    You said what you need to say.

    Just like me.
    Thanks for sharing  it was like they were gonna send her home after treating a leg infect but Reid the virus after 11 days in hospital it was positive and she was sent to the virus ward she thought going home. And  now she been sick a few days but had  nurses doing her legs and physios coming in she told them. They did nothing.
    She had nurse and physio yesterday they left here there . She was taking later .
    I just called them via text they refuse to tell me anything g via the relay service had to wait till my brother msg me. He did it gonna another 2 hrs wait for dr to go round.

    I'm be sat in my wheelchair waiting. Even then I dont know. Wether i want to know.
  • frank96frank96 Member Posts: 38 Connected
    If she was talking try not to worry! She's probably got a nurse brushing her hair having a natter and a cup of tea. Reduced staff makes it very difficult to get straight answers. Not knowing can be worse than bad news. Try to distract yourself and don't feel bad if the distraction works and you forget about your Nan. I'm sure she wouldn't want you to worry! 
  • RonniRonni Member Posts: 162 Pioneering
    My mum would normal be chatting to the lady she just in next bed or so.thing. but my brother to call her her she not talking right q d cant breath.
    I'm doing laundry done 3 loads on the fourth  how much stuff does and single 49 yr old woman have. Think I might washing everything  I own just to distract my self. Most is yrs old.
    My brother dont speak to me that much . He talking to everyone else. Usually let's his cousins know before telling me anything.

    Things are changing I cant keep up. Theres jus me and her.
    Theres nothing else.
  • RonniRonni Member Posts: 162 Pioneering
    Got msg theres no change. I'd didnt get any sleep.
    For got to take antibiotics  yesterday for the pressure on foot I've had for a year.

    My heads spinning got no focus trying to transfer had to stop. Sensory breaks asnt working need to lie down. Theres no way of breaking from this. No way to stop everything this. Just have to go through it.
  • frank96frank96 Member Posts: 38 Connected
    Best of luck with everything life sucks sometimes but we just have to plod on. Keep calm and carry on as they say 
  • RonniRonni Member Posts: 162 Pioneering
    Thanks @frank96
    Mum would say that.
    Hospital say theyl know more tomorow. If there are no urgent news. We will know tomorrow.
    Thanks all.
  • frank96frank96 Member Posts: 38 Connected
    No news is hopefully good news. If something serious was happening I'm sure the hospital would let your family know! Stay safe and keep your chin up!
  • RonniRonni Member Posts: 162 Pioneering
    Thanks again all.
    The meds are working she  just have find the strength. She unconscious on mask to help her breathing. A little weak but she hanging in there.

    On another note I got a referral  number for action on hearing. Who  pro independent living support for the deaf. So will see how works out.

    Waiting for my housing key get Intouch.
    They still on limited service.
    If shops and cam go back why cant support services. 
    Any thanks all. Hope you all ok. Or plodding on. 
    We all need to start moving forward.
    So pushing for the support you need. 
  • RonniRonni Member Posts: 162 Pioneering
    I know have dark time for a while but I take after her. Stubborn. 
    I writing on here cause theres no where else.  Even the shout txt msg didnt reply.

    So just need a place to put things down.

    I read @Adrian_Scope    post  bear in mind post.
    I thought it best not to reply. other peoples posts. Just perhaps game ones. For a while. But I'm reading. 
    Keep well.

  • Lou67Lou67 Member Posts: 865 Pioneering
    Oh Ronni I really hope things get better for you soon, and your mum makes a full recovery, take care. 
  • RonniRonni Member Posts: 162 Pioneering
    I just send txt to my brother. The hardest msg ever.
    She a fighter. I want her to fight. They a point we have to make the decision.
    I want her to stay for selfish reasons. If she cant fight anymore.  I made it I wrote it. Because I know I wouldn't to decide at the time. 
    I want to take the decision back.

    Feel free to delete posts . I am sorry writing it just nowhere  else to say what  I need to. It supposed to be good to talk .. I'm talking into space.

    I have to wait to see if has the strength to fight. This time and the next.
    In two months 2 infections covid. And she copd. Septis an septic shock. 

    Surprise us mum stick around fight it. They wont let in to be with you sorry I'm sorry. Stay strong love you.

  • RonniRonni Member Posts: 162 Pioneering
    I cant do this

    Delete it all
  • frank96frank96 Member Posts: 38 Connected
    Judging from your posts you care about your mum very much I'm sure if she could see them she would be happy to know how much you care about her!! 
  • Lou67Lou67 Member Posts: 865 Pioneering
    Yeah definitely, please try to stay strong Ronni you and your mum are in my prayers. 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Ronni said:
    I read @Adrian_Scope    post  bear in mind post.
    I thought it best not to reply. other peoples posts. Just perhaps game ones. For a while. But I'm reading. 
    Keep well.

    Hi @Ronni, I’ve just caught up with this thread. I’m sorry to hear about your mum. Has your brother responded to the messages at all?

    Please don’t feel as if the post I put up earlier was directed at you, or that you can’t express how you’re feeling here. I noticed you said that you want to delete the thread and I just wanted to check you’re certain before I remove it.

    I think it’s very clear from some of the replies that lots of members are concerned and care about you. So please keep in touch.
    Senior Community Partner

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • Lou67Lou67 Member Posts: 865 Pioneering
    Oh definitely Ronni, you should just leave the post it allows you to get a bit of support and allows you to talk about your feelings. 
  • RonniRonni Member Posts: 162 Pioneering
    I have scope I dont want sad . I know il get.
    But my wired different different I having a sensory overload I'm overthing. Theres no sensory and wont be for a while. 
    I lied here said things were sorted now I  didnt to worry after she went last month
     But no it not I tried. I came here  found answers but I dont have is support work havent for long time. Hav nurse Tuesday friday for my for  foot only came friday last wk.  I tried to get shopping online I tried dont always get all mine somone comes when they can they took some to her I sent some. I'm supposed take care of heR. She down road 11 and we txt not be able to see for a year. 
    Came on scope found things I have wait till someone to help.
    I lied. She glad I was sorted

    If survives it keep again and again.  If she dont go home no more 11 and 5.
    I'm trying to step bank hav a sensory break but cant I dont how. If not somthing to make sense of.
    I have go through whatever it is.  Go through alone. 

    Just had write it see the words that all on phone so dont know real its al mags on phone. 
    11 and 5 is real. I how do I stop overthinking how do have sensory break. I have figure out.  I dont on the end when there . More 11 and 5 because it all on hold. And no ones coming but for foot they referred 3 times to social work for support they hold several others have to. I have to wait.  I go through it alone figure out how step back . But I cant see beyond 11 and 5.
    Life on hold is no life its illogical. But I wont give up the answers somewhere   on here.
  • Lou67Lou67 Member Posts: 865 Pioneering
    Hi Ronni how’s things today, I really hope social work can get some help out to you soon. 
  • RonniRonni Member Posts: 162 Pioneering
    Holding on. I'm waiting for them. It easy finding a support for the deaf.
    Im holding on i will know by tonight about mum.  I waitinting for a message.
    Thank you for being here all.
  • Lou67Lou67 Member Posts: 865 Pioneering
    Your welcome Ronni x
  • RonniRonni Member Posts: 162 Pioneering
    Sent mum a txt our 5 o'clock hi.  
    Waiting for a call from dr about about a scan.
    There be choices to make soon.
    Social has been recontacted.  By my housing officer.
    Hope come soon.
    Sent a msg to mums church she always does prayers for others not well and lights candles. So thought might do that.maybe.
    Now I just wait for this evenings update.

    Right now I'm feel like I'm in a tunnel. I know there's light somewhere at the end but the train has stop.
  • RonniRonni Member Posts: 162 Pioneering
    Still in the tunnel. Last  got msg she holding on it is up to her and the meds now . I will wait for her to decide.
    Somehow this more got email from housing officer. After five years I got a social worker and they working together. I might have an other fir new place that's almost finished. 
    It all gonna take a bit. I just got to get through whatever happens in the present
    . But  will have support.
    Il move at some point.

    Trying not to overthink things I just spiral. I feel selfish on me right now. But till I know about mum. Then I have to deal with it totaly.
    For now laundry sorting out things theres nothing I cand for her I cant be there.  But still text 11 and 5.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Ronni, you're not being selfish at all! 

    I hope things manage to get sorted, please do let us know how you get on.
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  • RonniRonni Member Posts: 162 Pioneering

    Getting with reading the lounge topics. Re reading alot of especial mustang's posts we had on chats the past month.
    Future is still unwritten. Still focusing on now and will with things as they. Come.
    The poetry helping to. Globster reintroduce me to that havent written for years.
    A lot of those style post
    Woodbine . Spice man Lou, frank and all the many other posts. And yours and Adrian's. Not the ones about ones about housing, finances etc. 
    The things they share personal experience.  And the ones like singing in shower or favourite drink.  Sometimes more important than people think.
    Catch you around here.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I'm so glad you have found us @ronni and that you have enjoyed getting involved with things in the coffee lounge! I'll be sure to keep the mystery titles coming.  :D   
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  • RonniRonni Member Posts: 162 Pioneering
    Today has had certain now I got social worker and housing offer. Theres two possible neither definite. Ones in manchester where I've lived al my life. Brand new place. But not close to amenities and not supported worker who Also can deaf people.
    The other none definite one is in kent a accomidation and support service for deaf people with other disabilities. It by the sea.

    I also got letter from I'd to pay pay. But sign i dont have 2021.
    I got a reimburse tax insurance on my chair. It's just ironic nothing for years and it all comes whilst this going on.  
    Laundry that what I'm going to do for now. Take each day then make decision.s

  • RonniRonni Member Posts: 162 Pioneering
    Decisions. They called him in to discus the next step the wouldn't let anyone in before. He thinks they want to switch the machine and see if she can breath on her own.

    Ii got to wait for msg of what they decide.  

    Dark times  dark nights.
    No logic.
    We fight.
    Dark tunnel
    Tunnels end. 
    Our journey begins.
    There is strength. There is hope. 
    Are you going to fight or fly. 
    Tell me...

  • RonniRonni Member Posts: 162 Pioneering
    She gone. I dosent real but she gone. Just me.
    The train is moving.

    She chose to fly. U towards sky
    Sent a last message to say goodbye. It dark
    There was two
    Now just one.
    I fight
    The night
    I find a way
    Take it day by day.

  • frank96frank96 Member Posts: 38 Connected
    I'm so sorry to hear of your loss ronni. Have a good ol cry and remember the good memories. Stay strong!  
  • frank96frank96 Member Posts: 38 Connected
    Oh and what a lovely poem! 
  • Lou67Lou67 Member Posts: 865 Pioneering
    Oh Ronni I’m so sorry to hear this awful news, just want you to know your in my thoughts and prayers, take care of yourself xx
  • katho31katho31 Posts: 694 Member
    im so very sorry Ronni for your loss. our thoughts and prayers are with you at this terrible time, we are here for you, if we can just ask and we will try our best to help x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I'm extremely sorry for your loss @Ronni! Please do take care of yourself and take each day as it comes. The community is still here for you, you don't have to go through this alone.

    If there is anything we can do to support you then please let us know.

    I hope this can be a space for you to process what has happened. Beautiful words.
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  • 66Mustang66Mustang Member Posts: 4,648 Disability Gamechanger
    I am really sorry to hear about your loss Ronni. Try to take care of yourself. There are lots of supportive people on here but I'm sure everyone will also understand if you need your own thinking time.
  • RonniRonni Member Posts: 162 Pioneering
    Thank you all for your kind words and help. Lots of things going on at the moment.

    Still up and down some.

    I've be popping on just reading for now. 

    Just to say  sometime macho big brothers might seem distant. But they surprise you when you need it most.

    Even if it's over messenger.  He doing all things that need doing on his own. Then comes on messenger to chat and check in on me. 

    We still in isolation down here. Well my nieghbours isolating from virus
     Me I still just cant get my support sorted or transport got put on hold again because wrong list.I shall explain another time.

    Brother organised cremation. Memorial cant ahead till the church opens.

    Il be around reading. 
    And be back on the posts soon. Thanks take care all.

  • Lou67Lou67 Member Posts: 865 Pioneering
    Morning Ronni, I’m so glad your brothers been checking on you, hope everything else gets sorted soon take care  ❤️
  • katho31katho31 Posts: 694 Member
    hi Ronni, thinking of you and prayers said, you are an amazing person  <3 best wishes and we are here xx
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Ronni, please do take your time. We are here if you need anything. Take care.
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