• Elizabeth Vann, who has bipolar disorder, shares her experience of being with her sister when she died – the challenges and the positives

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Thursday dinner time, my phone rang and I saw my niece's name. I knew this was not good. Jessie was in floods of tears. Mum is going to die! While trying to calm her down I grabbed my car keys and drove to where she was with my own mum. When stress like this happens I actually handle it brilliantly. It’s afterwards it affects me. 

We went straight to hospital. We were allowed into critical care where my sister was. We were all masked up but this was a non Covid-19 ward. Kirsty was on a ventilator. I spoke to the nurse while Jessie and my mum held Kirsty’s hand, stroked her head and talked to her. The nurse told me there was very little brain activity and there was no hope for her. I’m not an emotional person as a rule but this was like a punch to my heart. Kirsty was going to have a brain MRI scan the next day and we would be called to a meeting on the Saturday for results. From this moment I became the first port of call for all calls as my mum couldn’t cope.

Friday afternoon mum and I discussed next steps. Thankfully we were allowed time with Kirsty so my brother could say goodbye. I went up with Andrew. Both of us were in tears. Neither of us have ever experienced this before. Again very little brain activity was detected.

On Saturday my phone rang. The number that was beginning to terrify me. We were asked to come up for a meeting. As a family we did so. Jessie said her last goodbyes while we waited for the consultant. Andrew took Jessie home. 

These were the facts. Kirsty had been in hospital waiting for a rehab bed, we were then told her airway had been obstructed but they didn’t know why. She then had a cardiac arrest and it took seven minutes to get her heart going again. The time her brain had without oxygen resulted in a catastrophic brain injury. She was not going to survive. As a family we have always signed up to organ donation. The transplant nurse took us through every step, we told stories, Kirsty’s wishes and what would happen. Then we were asked if we wanted to be with Kirsty when she died. Without question I said yes. I didn’t need to be asked twice. This was one last thing I could do for her. Our last journey together. I am the eldest child. I’m the big sister and this was my final role as her big sister. I had to be strong when my heart was breaking.

I have never been with anyone as they died. At this point I said I had bipolar disorder type 1. I didn’t know how this was going to affect me but I wanted and needed to be there for Kirsty. My mum couldn’t do it and felt that she needed to be there for Jessie. I respected that and stepped up as the big sister.

The transplant nurse explained what would happen in a few hours time. I would get a call during the night and then I would go up to the hospital. I took mum home and I then went home. I called my best friend, who has been that since we were tiny. I cried more than I ever had before. I listened and cried and tried to ground myself with her love. She knows me better than anyone. I tried to settle down, made a decision not to take my sleeping tablets. I also arranged a lift up to the hospital because of my medication.

The phone call came at 3am. Andrew, the transplant nurse, said he would call again at 4am for me to come up. At 4am I went up. I stood outside the ward and took a breath. These next steps were brand new territory. Never been taken before. I walked up to the room and went in. Kirsty had a knitted blanket over her. This was because she was doing the most unselfish precious thing in the world, to die so others can live. I sat at the bottom of the bed and rubbed her ankle. I spoke to her and promised I would look after Jessie and mum. I then met Abi. The nurses did some tests but at the same time spoke to Kirsty like she was awake and alive. With dignity and respect. The tests just confirmed there was no response. Gauze in eyes, blood being taken or any reaction at all. Then Abi started to talk to me. 

She knew I had bipolar, asked some other questions then explained next steps. We would go down to theatre, it was just an empty room next door to the theatre where her organs would be retrieved. They would remove all life support and then let nature take its course. I was told she would make some noise but not to worry. They didn’t know how long it would take her to die but if it was longer than three hours they couldn’t harvest her organs. Abi also explained that Kirsty was in a very deep unconsciousness. She wasn’t aware of anything. 

I was given some toast. Abi talked to me about my cats, what I did work wise, just things to ground me. They said that we were getting ready to go down to theatre. Then it hit me! I think I went into shock. I felt sick and dizzy, I thought I was going to faint. I had to walk out and sit down. I took some water. Abi continued to talk to me. We led the way and walked out of the ward, Kirsty was behind us. I couldn’t go into the lift and sat on the stairs. With a little gentle encouragement Abi and I walked down the stairs and into the theatre. We sat at one side of the room. Abi asked how my bipolar affected me. While trying to answer I could see the breathing tube being removed, then everything except the heart monitor and catheter were left in. I just looked. Then the loud breathing started. I hadn’t expected that. Without finishing my sentence I got up, moved my chair, removed my mask and sat down next to Kirsty and held her arm. I was there for her. It was unconditional. Abi kept coming up and rubbing my shoulder; I’m not tactile but I was so grateful for that touch.

There were several stages, first her heart rate went up, then she went blue due to lack of oxygen, then she went peachy colour and finally her heart rate fell and disappeared. Abi told me at each stage what was happening and roughly how long was left. Kirsty’s eyes were wide open but it was a reflex and she couldn’t focus or see. My final words were that Gran and Aunt Bet were there for her, I promised to look after Jessie and mum, I gave her permission to go, I loved her and to be with the angels now. The last minute or so was so peaceful. At 6.58am on the 4th Oct 2020 Kirsty passed away. She died 30 minutes after life support was removed. Perfect timing for transplant retrieval.

You may ask why I’m telling this story? There are several reasons. Abi had said after Kirsty had died that I had done something very special. I looked at her and asked what had I done. She said being there when Kirsty died, very few people do this. My partner said lots of families just want to be called once their loved one has died. I hadn’t even contemplated this as an option. Yes it was terrifying and I didn’t know what was going to happen. At each stage I was told gently what was happening. The breathing I found very violent and upsetting but I was assured Kirsty knew nothing about it. And at the last bit she just slipped away. You may also ask why I didn’t hold her hand. I was terrified, I couldn’t have coped if she moved her finger or hand, that meant she knew. So I rubbed her arm. My hand was on her lower arm right until after she had died. This had been the most precious thing I could do. Why wouldn’t you do this? Once I got over my fear I am so pleased that I was there for her.

Secondly my bipolar was taken seriously and they took the same amount of care with me as they did with Kirsty. I was fully supported and informed every step of the way. Abi checked in with me constantly and tried to ground me. Even after Kirsty died I was checked on. I was given the blanket for Jessie. Another nurse who was there took over looking after me until I felt able to leave. She was so upset and I was more worried about her than myself.

Thirdly the transplant retrieval. This was a no brainer for us as a family. We are all signed up for organ donation. Kirsty didn’t have Covid-19. So we tried and I am proud that we tried. That’s all we can do in these times is to try and retrieve organs. The need for them never goes away. Please think before you say no. We found out on the 24th Oct 2020 that one organ had been used and has saved a lady in her 60s who has been waiting for four years. This was amazing!

Watching my mum as we have had to move her into Kirsty’s house to care for Jessie. My mum has lost her daughter, home, car, income, job, caring for Kirsty, her purpose, everything. I catch her at times and she is completely lost in a sadness I can’t describe. It’s all too much for her. My tolerance hasn’t been great; I have felt that the wrong daughter has died. I’ve always known Kirsty was the favourite daughter. I couldn’t compete; I didn’t even try. But I can’t fill that void. I can’t be something I’m not.

Finally, I would like to say seven weeks later that I am still stable but I’m not. The initial stress is not a problem, it’s afterwards it hits me. My mood has plummeted, sleep is hard and eating is non existent. I keep my psychotherapy appointments, as well as those with my care coordinator and GP. I wondered if watching Kirsty die would change my suicidal thoughts? I thought it might make me think twice, but I currently feel that that safety net is not there for me. I can’t be the third child that my mum loses. That’s right, she lost one of my brothers 40 years ago when he was one month old. So to lose three out of four children is unthinkable. So yes it does make me think twice. No matter how much that thought is there I can’t plan, act or think about it. So I feel very stuck now. I have a great support system and knew this episode would come. 

This is the first time I’ve had to reflect on what has happened. I am still haunted by the thought that she knew what was happening. It’s this thing I worry about over and over. I keep asking my partner, who is a paramedic, if Kirsty knew what was going on. I’ve been assured time and time again that she didn’t. I still have flashbacks. 

If I knew how all of this would affect me would I do the same thing again? With no doubt I would do the same thing, no question. I don’t regret anything I’ve done. To be there for Kirsty on her final journey was a privilege.

If you experience suicidal thoughts or are worried about someone else, The Samaritans are available, 24/7 for free, on 116 123

Further reading

Grief in the time of coronavirus: coping with loss in lockdown

Bereavement counselling helped my whole family

Coping with memories of grief and loss at Christmas

13 things I've learned about death