Hi, this site has really helped so far with advice and support from people and everyone has been so lovely.
My daughter has been off sedation for almost a week now and there has been little change in her condition. She has been moved onto the long term icu unit and has been given a tracheostomy now which she handled well. They have said since the tracheostomy she has been on 25% oxygen and is as stable as can be currently. She opens her eyes but no tracking and she doesn't move her head or any of her body besides slight arm movement on her left side which they say is very rigid and she keeps raising her arm tightly to her chest. They say she shows no sign of response but i do see her make eye contact with me when i visit her. They have said they are going to start assessing her in the next couple of weeks using a smart assessment which will be very indepth and have said they will use this for quality of life discussions.
We are still keeping hope despite doctors pessimism ( they keep mentioning persistent vegetative state ) and are listening to people on here who say that it is early days still and that it can take a long time and that she needs a lot of time. We are talking to her as much as we can and have taken her an ipod to listen to and also something with smell on and have put pictures up by her bed.
I am struggling at the moment with knowing what to do as it feels as my whole world has stopped and is on hold and it feels like i no longer know how to exist normally while i am waiting. I phone the ward for updates daily as cant visit everyday and the nurses now just say no change and she is comfortable. It feels like i am a burden and annoying them by calling everyday but cant get her off my mind for a minute and feel like i need to be doing something. I am coming to the end of my sick leave from work and have to have discussions about returning but dont know when or even if i ever will be ready to return but i do enjoy my job. Her father has returned to work this week and i feel so lost and angry that things are expected to carry on while she is is this position. I am trying my hardest as i have 2 other children and need to stay strong for them and i worry that i have been distancing myself from them as i am so consumed with my daughters health.
How have other families coped with this waiting stage and does anyone have any advice regarding carrying on with work and looking after other children? I dont understand how i can just continue as usual when this has happened and know that i have to accept that life has changed significantly but unsure what i am supposed to do with myself when my brain is constantly telling me i need to be doing something and is desperately trying to get control over something.
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Parapp
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Extend your sick leave way too soon. Your manager should also refer you to HR/ Work OH to support in near future with returning.
For me, I wasn't ready for work Mentally or Physically but it was purely a goal. We have yet to accept but just push myself
When my sick note was raised GP expected me to return 12months or so later and stated any issues from my employers they could go through them, I returned 6months later. I shouldn't of done it returning 16th September 2020, I was shaking like a leaf, my worry (still occurs) my head space (not really improved), I couldn't talk, basically I was still on shock. Now still the same some people aware of my situation but it brings awkwardness with them in what to say I do not discuss husband at work , because my head goes and back to square one,
Our daughter is 3 now and our son just turned 16, roof to keep over head, Bill's to pay, bellys to feed, husbands debts to pay, it was and still continues to be difficult. 10.5months later support from work not great, like I have some magic wand now (basically its dragging for them with appointments when his health poor, unpredictability basically) so more demands put on me, for example they know I'm full time carer yet I have more work than all my colleagues, like they are bullying me. I've shared my concern last week, and its not reduce , they put it up.
However despite juggling kids, caring, working with no emotional/physical help the constant emotional turmoil, physically feeling exhausted from stress. returned to was the inevitable for me though.
Im 10.5 months back at work the all round demands still breaks me, and on bad days I do lose the will.
Throughout this for the children sadly seen first hand out of anyone. Having speech delayed, screaming toddler, isolated teenager matter of putting a mask on for them even now I continue and compensates by baking and then it all floods out when toddler settled. I cant cry in front of husband he cant regulate behaviour he becomes confrontational and then wipes him out.
Your going through shock atm, totally natural; to help get me through a day I wrote notes down what I needed to do takes me ages example cooking a meal this time last year took me 4hrs, due to caring, head all over the shot, now its 1 hour. In april 2021 then i hit rock bottom for few months coming out of this autopilot stage apparently round 12th, 13month date. June 2021 finally at stage to find self help books from true life experiences. Basically brain allowing headspace away from the constant thinking of what the hell is happening In a way, though it's there still but I know it's changing on good days, (rare).
I just hope you have supportive family
My approach has been purely reliant with my self as we have no family or supportive friends I'm kind of managing now on many roles but constantly pulled in so many directions. X
Thank you and i am so sorry that you are going through this alone without support from people. It must be incredibly lonely and difficult for you and it is really unfair that your work are not being more supportive. My other 2 children are 13 and 15 and i could not imagine how hard it must be with a toddler, you sound amazing and so strong and you should be proud of how far you have come alone.I have spoken to my work now and they are being supportive at the moment and have stated that i am on compassionate leave which is discretionary and they do not want me to rush back or think about returning at the moment and have stated we can talk about reduced hours or shift changes when i am ready. The guilt over my other 2 is eating me up at the moment as it is summer holidays and they are stuck in the house while i am either at hospital or locked in my bedroom crying and they have both got these masks on where they act as though nothing has happened and they are not affected but obviously i know that they are and this is their way of coping but it makes it so hard as i am unable to pretend and find it hard to be around them when they act like all is ok but i am trying although the thought of going out or doing something enjoyable feels like i am betraying my other daughter if that makes sense. I struggle to understand how life can continue when my world has basically imploded and is on hold.
Family and friends have been ok, lots of offers of help but mainly people avoiding me and no visitors etc due to how upset i have been. Although its only 2 and a half weeks in, it almost feels like people are getting bored of it and moving on with their lives. Messages and calls are easing off and everyone seems to be getting back on with their lives while i am just stuck in this nightmare and it almost makes me feel like i am not strong enough because i am unable to carry on as normal.
Hearing from you gives me strength and reminds me that it is a long road ahead and helps me to realise that i am justified in taking my time and in my emotions. I often feel like i should be superwoman and brush myself off and power through but that seems impossible at the moment.
I hope things get easier for you in the future and that you can get some more support, i am so glad to have found this site as it really helps hearing from people who understand how it feels and the complexities that are involved in this going forward.
Take care of yourself, you really do sound like you are doing your best and you have come so far. You give me hope so thank you.xxx
No one has a good reaction or response at these times. Unless you know someone or connect with someone who has been in situation, nobody else gets it, its really an emotional, physical distressing strike that no human can sympathise or really capture that empathy you would expect unless they actually been there.
This is heads up.
As time goes on (way to early for you at this moment) we then perceive expectations from others no matter what angle of life they appear to you, friends, colleagues, family, neighbours.
For example I'm a giver, will do anything for anyone, even if I didn't like the person and they were down on luck, I'd be checking if they were ok I've stuck my neck out for many over many years. That's just me.
The nursing and care I gave to my husband and continue to do no one could do better, no one if they tried there utter best, would reach that bar, even with decision making, and holding it together, another reason my husband remained home and home early.
But too late for me, my expectations or way I am I thought others I knew for 20+,years would mirror a fraction of my standards or that high bar just with emotional support, .
I've only realised in past 3weeks, no one could ever reach that bar. We are all different, people have different coping mechanisms, however if they walk, they walk that's down to them. If people dont show the sadness you have, that's the way they cope, if people flutter in and out with contact, it's fine that's there way in coping too. People dont know how to respond.
I wish I knew this March 2020 ready for May 2020 when people walked, then disappeared but i now know, it wouldn't make a difference where I am now physically, but would of supported my emotional wellbeing as so distressing. Dont hold your outlook, how other people should respond it can take over with your thoughts and hinder with your emotion and general wellbeing.
However, you may have close knitted family, good friends and neighbours and hope you dont experience the above to much in depth, it's just bringing awareness how people respond and wish I knew right at the beginning with some expectations.
Hold it together girl, your reaching out on here too, your doing good x
Thank you and that is really important for me to understand i think. My sister keeps telling me that i worry and care too much about other people and what they think and that i need to stop it as it is not helping and all that is important is my daughter and my family and i need to stop thinking about others. I do read too much into other peoples reactions and especially my husband and other children's and do get sngry when they dont seem as upset as i am but i know that is their way of coping and i am slowly starting to understand that just because people dont show it the same way, does not mean they are not affected or struggling. It is so hard to pull myself out of this overwhelming distress and helplessness feeling and i know that it is going to take time. Everytime i visit my daughter i still have thoughts in my head of whether she will be awake and back to her usual self and i am struggling to accept the reality of the situation but i am starting to get better at lowering my expectations and learning to be patient and accept that this is a long road and grab onto all the small positives. She is cuurently breathing on her own with a Swedish nose and i am so grateful for that and am learning to be grateful for every small step and that she is still with us and fighting. Talking on here and hearing from people who understand is really helping so thank you and it helps to hear different experiences from other people. It helps me feel less alone. Xxx
18 days is still an incredibly short time in improvement terms ; some folk here have waited 3+months for progress. No one can foretell the long term results of brain injury but I believe everyone deserves time and care whilst loved ones wait & hope for positive signs, and you have every right to demand more time.
Rewiring and recalibrating of the brain is a complex and time consuming process. The worst scenario for brain injury is an obvious fear but many apparent lost causes have survived and defied the odds.
Take care of yourself Parapp in order to keep strong through this heartache. Like New_Beginning, I think it's important to extend your sick leave and maybe to ask your GP for short term anxiety medication to help you keep going.
My heart goes out to you, and I pray your girl will defy the doctors' prognosis. Love Cat x
Thank you cat3. I have finally spoken to my work after avoiding them the past couple of weeks and they have stated not to think about work at the moment and not to rush back. They have said i am on compassionate leave which is discretionary and when needed they will talk to me about sick leave etc and also reduced hours and changing shifts etc.I think the main problem is that i can still not get my head around the situation and still keep expecting a miracle and some positive news each day such as she has woken up properly or has moved etc but i do know that is unlikely and that it is extremely small steps at the moment and is a waiting game.
This site really does give me hope and hearing from others and reading stories helps me to stay strong and keep my hope but just seems so surreal at times. A few people say to me that someone i know was told about the situation and was crying and it suddenly hits me that they are crying over my situation and because they feel sorry for my daughter and for us all and it brings it crashing to me that this is my life at the moment as sometimes it does still feel like it is a movie or is happening to someone else.
Doctor has prescribed my anti anxiety tablets as my anxiety is really bad and also have really low moments but i have not started taking it yet, i think part of ur was where they were telling us last week to be prepared for the worse, i was worried the tablets would mean me missing a call in the night or would take away my emotions and switch me off when sometimes i feel i need the strong emotions to keep me in reality. Going to speak to doctor today and be honest and start taking the tablets as i know they will help.
Thank you so much for your support on here and for replying to me as it really helps knowing that others know how i am feeling and that i am not alone in this awful situation. Xx
Great news about the compassionate leave ; it was an extra drain on emotional resources you really couldn't afford. And please take the anti anxiety meds (maybe halve the dose to start with to measure its effects) as they can massively calm the rawness and fear without numbing cognition.
And please don't be afraid to talk about the cause of your daughter's brain injury or feel you could've prevented it. We all have to prioritise where providing for our families is concerned. You must not feel guilty ; my family knew nothing of my depression when I was in my teens and twenties because of my reluctance to admit it, even to myself. Mental health issues can be truly invisible.
Please keep talking Parapp. Cat xx
Oh and if you can take some respite from any sort of diversion please do so for the sake of your own strength and sanity. Don't for one minute feel you're betraying your daughter. You're fighting to stay strong for her, and her siblings. I hope your father responds well to his treatment. x
Thank you so much. I am trying to stat strong and learning to accept small steps and be grateful for every day that she is still here fighting so overwhelmed with different emotions at the moment but talking on here about it and hearing from people who understand really helps so thank you xxx
Not yet to be completely honest. I have been speaking to my doctor and they have given me different tablets to try. It may sound strange but i am aworried about them taking away the pain and emotion as i feel that i have to feel this way and that i need these feelings to be able to understand what my daughter is going through and that i dont want to be numb to it. I have agreed with my doctor to start taking them and they have assured me that they are mild and will not affect me hearing the phone in the night ( 1 of my other concerns is that they will make me sleep too deeply if something happens) and that they will just take the edge off so i am going to start them this weekend as i am realising that it is not healthy or helpful to my daughter to let my mental health get out of control but i dont think they will help that much if i am honest xx
I see where you're coming from P. But your GP has prescribed a low dose which won't dull your senses and, if it helps you feel less overwhelmed and stressed, it can be a temporary but valuable coping aid.
Hi, I’m an ICU nurse and last year I was the mum sat at my daughters bedside in the ICU I work in, after my daughter suffered a serious brain injury after attempting to take her own life. I can fully empathise with you.
As people have already said, it is early days. Don’t give up hope. Last year I feared the worst. As an ICU nurse I knew too much but my daughters recovery is truly a miracle considering her brain injury. How old is your daughter?
Luckily you are able to visit your daughter. Last year they bent the rules whilst she was on my ICU but once she stepped down I did not see my daughter for 6 weeks. It was heart breaking. I felt the same when I rung for an update. The updates were really poor and it was so frustrating. Once I returned to work I ensured that I rung the relatives twice a day before my breaks (out of full PPE, as I was working on the Covid unit) to give them a thorough update. It made a difference, the relatives were so thankful and reassured.
As for returning to work, ask your GP for another sick note. I took three months off work and even then I probably returned to work too early. Even 16 months down the line with the ongoing issues with my daughter, pressures of working on ICU during a pandemic and recently finding out my father has cancer, I’m struggling and I’m seeking help. I feel I cannot take much more. My husband returned to work after a month but I was not ready. I knew I would not be able to focus at work. You probably are not sleeping well and your emotions will be all over the place. You need time to process what has happened and look after yourself.
I’m here if you have any questions. I’ve been were you are now and I also have over 15 years ICU experience. Remember you also need time to heal x
Thank you so much for your reply Kezza, our situations sound extremely similar. My daughter turned 20 last month just before this happened and her injury is also from her attempting to take her life although i am really struggling to tell people that and feel like i am scared of judgement about it. Although nowhere near as important as your job, i work in an emotional support job for people (on a helpline) and wonder if i can ever go back to doing that and feels so strange that i am now similar to the people that i normally help in work and keep thinking that should mean that i am better able to cope. My father is also currently fighting cancer and is having radiotherapy currently.It helps to hear i am not the only one who feels that way when i call and some nurses sound like yourself and are amazing at talking to me and updating me but some others are just very blunt. It is so lovely to hear that you are using your experience to make sure other relatives are supported in work as the updates and just daily involvement are so important. It feels as though i have been removed from her life at times and am not involved in helping her which i know is because they are the best people but makes me feel so useless and almost adds to the worry about judgement that nurses etc may be thinking i dont deserve to be involved because i let her down. I cant imagine how hard it must have been to not be able to see her for so long and i am grateful that i can see her now but i am struggling with just an hr visit a couple of times a week as feels like i need to be with her all the time through this.
Can i ask how your daughter is now and what the past 16 months have involved for you? Trying to prepare myself but keep being stuck between the relief of her still being here and alive but also the realisation that the old her has possibly gone and then get hit with huge waves of grief. Quality of life discussions are hard as they keep mentioning what she did and i keep explaining that it was a cry for help that went wrong ( which is what initial accounts suggest). Just want to talk to her and hug her and tell her all will be ok. I was working overtime the day it happened and cant stop beating myself up over not having a sense or spotting that something was wrong that day.
Thank you for replying to me as it often feels so lonely in this situation and so surreal. Xx
Please do not blame yourself. Do not feel guilty for not noticing your daughter was struggling. My daughter was 22 when she attempted to take her own life and both my husband and I were at work. He nearly attended the incident but one of the first police officers on scene recognised our daughter and managed to radio through so he didn’t attend. I was working on ICU that night. When we both left for work there was no indication that she was troubled. People with mental health problems often put up a front and hide there feelings. Please don’t feel ashamed to tell people about what happened. Both my husband and I have spoken openly about our daughters mental health issues. No one will judge you. Mental health is an illness like any other medical problem and there shouldn’t be any stigma. My daughters injuries are different to your daughters, as she jumped off a bridge. She had to have half her skull removed to allow her brain room to swell. She also had a drain inserted to reduce the pressure. She had a bleed in the brain and an infarct (stroke) However, despite all of this she has come out really well. I’ll never forget being told by my ICU consultant/colleague of many years that she may not survive! She has a young brain and the brain plasticity to compensate for her brain injuries. At this stage your daughters brain will still have oedema (swelling) so it’s too soon to predict the outcome. I’ve nursed patients with hypoxic brain injuries and some have had a better outcome than we ever expected. The brain is such a complexed organ to predict. Over the years I’ve seen many patients that have defied the odds, so don’t give up hope. My daughters brain injury isn’t obvious to others now. She’s had her missing skull replaced and cognitively is doing well. But she has some deficits. I think going back to work at this stage will be too much for you. You are too raw and your job sounds quite stressful and emotionally demanding as it is. Even now I’m struggling and I liken it to ”my stress bucket is already full and it doesn’t take much for it to overflow” I’m actually seeing a psychologist next week. My hospital trust have set up a service to help critical care workers after working in ICU during this pandemic. I’ll need a long appointment as my case is so much more that dealing with working in a Covid ICU!!!! I’ve really been struggling and so emotional recently. I can’t look after suicide attempts, it’s too close to home for me. I also couldn’t work on the ICU my daughter was on. Luckily that unit has closed now so I don’t have that issue. Our experiences seem like we are living an almost parallel life! My father is having chemo but it’s not a good prognosis, plus he lives in Spain so it’s difficult to visit. I visited him recently, I’d not seen my parents in over a year. I’ve rearranged shifts at work and fingers crossed I will be able to go across at the beginning of next month. Work have been amazing and understanding. Speak to your boss/work, don’t be afraid to be honest and open about what has happened or how you are feeling. Seek help for yourself. I’ve been honest with work how I’m feeling of late (not difficult when I’ve been a blubbering mess at work!) and they have been so supportive. Sending you a virtual hug. I’m here if you need anything, a rant, a question, anything, anytime x
P.S. if you want to private message me we can sort something x
Thank you so much for your reply and i am sorry to hear that your fathers prognosis is not good and that you have been unable to see him. I hope you do get to go soon.My daughter has had mental health issues for several years and since christmas this year she had attempted suicide several times but mental health services refused to take her seriously and said that she was 'attention seeking'. They diagnosed her with borderline personality disorder although she also had a diagnosis of PTSD from trauma in her teens. The plan from mental health was to ignore her behaviour. They blocked us getting her put into supported housing or specialist mental health treatment as said it would make her behaviour worse even though we said we wanted her to just be safe for now. At the end of May we basically camped at the hospital for a week with my daughter begging them to put her in hospital for her own safety and to help her after several attempts. They finally agreed and she went to a mental health ward with a plan to get her stable on medication, start therapy and look at long term housing that could support her mental health. After 2 weeks the mental health team that made her original plan got involved and discharged her suddenly one day saying she needed to leave and cope on her own. They even discharged her in a taxi ( even though they knew i was coming to pick her up due to concerns) with enough medication to easily kill her , which my daughter ultimately ended up overdosing on but luckily passed out before taking all of it. It was going through the complaints process. The week before this she seemed to be doing much better and the anti depressants had started to work and she was making a huge effort to get herself sorted out. I struggle to get my head around it as for the last 6 months i have been constantly on edge and watching her all the time to make sure she was safe and a few times i actually had a sense that something was wrong and went and found her before she was seriously harmed but this time there was nothing at all, it seems to have come completely out of the blue even though her history makes me feel i should have known and i do still feel in complete shock. I spoke to her before i went to work and she wanted me to drop her over some make up and shoes and i told her i would ask her dad to in the afternoon but he never got chance to. I didnt find out until 3 hours after it happened as was so busy in work and no phones allowed so wasnt until i finished that i saw a load of missed calls and messages and took a call from the consultant at the hospital that i will never ever forget for the rest of my life. Sorry for pouring all of that out but so angry, guilty and upset that this has happened. My daughter always said she felt she would end up a statistic and now it feels she was right. Mental health have not even made contact with me since to offer any well wishes or anything and her cpn actually phoned round people the next day to say there was an incident and that she was fine and in an induced coma. Makes me so angry. It upsets me as the hospital said last week about speaking to her mental health team about quality of life discussions and i lost my temper and started screaming and shouting that i did not want them involved at all.
I have so many emotions at the moment and i swing from blaming them to blaming myself as i tried so hard to keep her safe the last few months and it feels like i let my guard down when this happened and put my own health and wellbeing first. Think that is what is driving the desperate need to do something and regain some control. I said to the doctor at the hospital that she did not want to die and just wanted to turn her thoughts and emotions off to stop having flashbacks and intrusive thoughts and the doctor said it looks like she has got her wish which makes me so sad as it shouldn't have had to come to this.
I am so sorry that you have had to go through similar but it is comforting that i am not alone. My job involves talking to suicidal people and i actually was proud of helping several people get help and saving some lives but i couldnt help my own daughter which is so hard. I have told work that i feel i will not be able to handle suicidal/mental health clients in the future and that makes me sad as i really felt i was helping people and doing something good.
I am glad that you are able to start speaking to someone and get some counselling. My work have offered me to speak to their counsellor but i dont feel ready at the moment but the hospital have said they will ask their icu psychologist to make contact with me which might help.
Thank you so much for the offer to talk and rant etc or any questions, although i have family and friends around, i still feel completely alone in this and speaking to someone who understands is so important at the moment i think. Sorry for the rant but just feel so overwhelmed with everything. Xxx
OMG SNAP! My daughter too was diagnosed with borderline personality disorder with PTSD. Although my daughter is insistent that it’s the wrong diagnosis! She too had several overdoses prior to her jumping of the bridge last year. It took a lot of fighting to get her the help she needed. “Attention seeking” that’s disgraceful. I have to admit the MH services here are diabolical too. My husband took a young girl to the mental health unit they discharged her and he felt helpless and couldn’t believe it. An hour later that poor girl was dead. The amount of times she was admitted to a mental health unit and they let her self discharge, leave the unit at 3am (really a young vulnerable women!) My daughter is now doing DBT, but it’s quite a specialised and Intense therapy for BPD. It appears to be working we’ve had no self harm or anything since her accident. Although we are dreading the next few months as she’s trying to get her driving licence back and finish off her nurse training at Uni. As a nurse I know she’s not ready to go back to uni. She can’t stand it be on her feet long without severe pain. She has reading problems from the brain Injury and at times really bad neuro fatigue. But she won’t listen, she’s in denial of her limitations. She can’t handle her emotions and rejection so we are fearing the worst. My husband said something the other day which was hard to hear. He said that if we had lost her last year it would have been devastating but by now we would have been over the worst and be moving on with our lives, instead of being on edge and having to live our lives around our daughter. We have to ensure there is someone around for her at all times for appointments etc. There seems no end, and just lately I’m really struggling. We’ve had this anxiety and stress for over two years now and just see no end to it all.
Talk to people, family and friends, it really does help. When my daughters accident happened I got talking to someone in Canada whose daughter also had BPD, whose daughter had the same name as mine and her husband was also a police officer! Talking to her about my feeling helped me realise that the disbelief, anger and devastation I was feeling was normal and that I wasn’t alone. I’m still in touch with her now.
You are not alone. I know why you feel that way, your friends and family aren’t in your shoes. So talking to someone who has been in your shoes helps. It really help me realise that it was ok to feel the way I did and it was therapeutic to offload to someone who understood. Message me anytime and please keep me updated x
Thank you so much Kezza. I can't believe how similar things are in our lives and you are the first person i have spoken to who has gone through similar things and the reality of BPD etc. Everyone i speak to about it don't seem to understand. I'm in Wales and to be honest out mental health system is disgusting. They really let my daughter down, she has been under them since the age of 8 due to adhd and suspected autism but they have never done anything to help and ignored all our warnings. My daughter was due to start dbt in 2020 but it got cancelled due to covid then she went downhill fast at the end of 2020. They put her on the waiting list for it in 2021 and she waited until march when they told her she could start it in April then 2 weeks before she was due to start it they took her off the list as they said she was not stable enough to do it but offered no help to get her stable and just left her despite several suicide attempts. She was under the local authority safeguarding team due to severe concerns yet the mental health team said to ignore her and that she had to get herself stable enough to engage with them but she and us had no idea how to do that. By that time she had severe anxiety and stayed in bed most days and was also having severe flashbacks, psychosis and her adhd meant that when she had dark thoughts she acted impulsively on them which was the huge risk. Been told now that there is going to be an adult practice review to assess all services that were involved with trying to keep her safe and also an inquiry into the mental health services as they have just been found liable in another case in my area in which a young boy died. It doesnt help now though and makes me so angry that they let things like this happen then just apologise and say they will change in the future while my daughter is left in this condition.I'm sorry to hear you are struggling at the moment and you can talk to me aswell anytime you want to if you want to message me, i am really struggling as well. Anxiety through the roof and unable to leave the house except to go to the hospital. Trying not to think about things too much and just focus on the here and now but it is so hard to do and the last 2 days i have been really low. Trying to stay strong for her and keep hope but i am so scared for the future and what each day will bring. This limbo and waiting is horrific and just feels so overwhelming.
As sad as i am that you have been through this situation and are still struggling and facing huge difficulties and i wish that you weren't , it really is comforting to know that i am not alone and not the only person going through this. Xx
No you are not alone. After my daughters diagnosis I read about the condition and it’s quite scary. BPD is probably the most dangerous MH condition for self harm and suicide. My daughter got kicked off the DBT after her accident due to missing appointments! Erm they knew what had happened! We had to fight to get her back on it. I think it has made a difference she is certainly more positive although we are still prone to wobbles. I’m so sorry that the DBT was not available during lockdown. Working in ICU through the pandemic I understand the pressures I. The hospitals with medical problems, but they could have still done some sort of remote DBT, and social distanced appointments. My daughters group session went to zoom and she still had her weekly appointments with her psychologist (when she was well enough) The MH services needs a shake up!! I know they let my daughter down so many times.
I know what it feels like to be in limbo, not knowing what my daughters future would be. Just take one day at a time and look after yourself. Rest and eat, you’ve got a long road ahead of you and you need to stay strong.
Keep me updated x
Dear Parapp,
I am so sorry for what you are going through and having to deal with. I can relate as my daughter survived a traumatic brain injury and underwent brain surgery to remove a blood clot when she was 18 (she is now 21). I was on auto pilot and went back to work a week later - colleagues appeared shocked to see me back. I think it was to keep myself occupied as I could not bear the uncertainty and feeling of helplessness. It was a long road to recovery and thankfully my daughter now manages well but sadly with permanent tinnitus/hearing loss, headaches and memory/concentration issues. It is not the way of life a parent would wish for their young daughter or son who prior to the injury had the world at their feet so to speak.
It is very early days for your daughter so just being there for her and visiting as often as you can seems the best you can do for now. The medical staff will be doing all they can.
In terms of coping with your situation, I found going on this website comforting and reassuring to speak to people who understand. I cannot talk to family as I still get upset at times and that then upsets them. Please do not ever beat yourself up for this - it was absolutely not your fault. When your child is suffering mentally, as a parent it can be extremely difficult to deal with and your daughter’s behaviour that day was probably no different than before. Spotting subtle signs can be impossible. I know this, as my daughter also suffered from mental health issues/self harm/suicidal thoughts in her teenage years, prior to the injury.
For coping myself, I found running helpful - running away from all the worries! Meditation/yoga can also be helpful. My heart goes out to you. Please be kind to yourself - you will get through this xoxo
Thank you. I think the reason i keep thinking of work is the same as you mentioned as i am struggling so much with just sitting around and waiting for news or calls or anything and it feels torturous just being in this state of limbo but i think everyone is right and that it is way too soon to even consider returning at the moment. I think i just desperately need to be trying to distract myself from the constant thinking and worrying but i know that it is not that simple and i need to learn to accept that this is how things are at the moment and learn how to cope. Think part of it is my mind desperately wanting to get back to some kind of normality and pretend that this hasnt happened but i know that is not a good thing to do and i have to accept things and adapt to a new life now. I am so thankful that she is still with us but it makes me so sad overthinking about the future and worrying about what her life will be like from now on.I am the same with family and friends as i cant talk to them as i know it makes them upset and i dont want to add to their pain or upset but feel so alone then.
This site is really helpful and i have been reading a lot of peoples stories and clinging onto hope and seeing how strong people are and how people get through this is encouraging and gives me strength.
Running is a great idea and i have thought about it a few times. I am not the healthiest person and have been thinkint that something like running might help me to get myself fitter and stronger for whatever the future holds and also i often have overwhelming thoughts of wanting to run away from all this so getting into running might help. I have also thought i can maybe see if my other children would join me on a run or cycle and might be a way of getting back a connection with them as they are sporty kids.xx
Pour your heart out here any time, Parapp - it helps to talk to people who understand. I questioned the doctors and nurses every day about my daughter’s injuries whilst she was in hospital and they could not give me any definitive answers such is the nature of brain injury and the after effects. It is so difficult being in limbo as you just want to know! I am sure you are absolutely exhausted both physically and mentally so take good care of yourself and take up any offers of help from family and friends. Keep us posted as to how things progress. Thinking of you 🤗
You are still in shock, Parapp. Even if things go better than the doctors expect you are now still grieving the way life used to be.When loved ones are very ill first we are in shock busy doing and then the busy doing energy kind of runs out..we start to realize we have no idea what to do or how to plan because of uncertainty and being in unknown territory.
Talking to HR at work is a good idea, talking to Headway perhaps first is as well as they likely know various ways the work thing pans out and can advise you somewhat and perhaps help with support.
Thank you. Yes I think you are right about the energy running out. This week does feel more subdued and almost the worst as before there were people calling and messaging and meetings at hospital but this week it has all quietened down a bit which makes me think that people are moving on from it while i am stuck in this limbo with my daughter and unable to remember how to almost exist anymore.Headway have been amazing and their hat nurse had been amazing in getting me through all of this. Coming on here and pouring out what is going round in my head is also helping a lot xx
i was without a pulse for 26 minutes after an accidental overdose. they told my family i would likely not survive - and if i did, i would be a vegetable... but here i am.
i am not sure why doctors prognosticate during the acute phase.. nothing good can come of it. It would be so much easier (and more accurate) to simply say 'we cannot say for certain'.. but i digress.
i am not sure what i can offer you other than my deepest sympathies. please do not give up hope.
Thank you, it is so encouraging and comforting to hear from people who have come through things like this and it gives me so much hope. I know the doctors give worst case and do not know the answers but i think that they are the people that you expect to give you information and help you through things like a loved one being in hospital and when they say they dont know and tell yoy the worst, it almost makes the situation feel even more hopeless. I am so glad that you proved the doctors wrong and it gives me so much hope that it is early days and that anything is possible so thank you.xx
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