Linda - Interview 25
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Linda’s husband, John, sadly died of two brain haemorrhages shortly after his 50th birthday in 2007. She and their 12-year-old son came home to find John collapsed on the floor. He was immediately taken by ambulance to their local hospital. Here, they were told that an aneurysm had led to two major brain haemorrhages and that John was unlikely to survive. A brain haemorrhage is a serious, potentially life-threatening condition, where blood leaks out of blood vessels over the surface of the brain.
Linda had always carried a donor card but did not know if John was in favour of organ donation. She advised other people to talk about organ donation with their families as these decisions are very difficult to make under stress when someone suddenly becomes critically ill.
Linda and her son discussed organ donation with a nurse, as well as alone, and were both in favour of donating John’s organs to allow others to live and have a better quality of life. Linda felt strongly about meeting the surgeon before the donation took place and said, ‘We met in the corridor outside of where John was taken to. And this man let me tell him for probably about five minutes, but he allowed me to tell him how special my husband was; that I needed him to be treated with respect. And they needed to take care of him because it was going to be out of my hands. I couldn’t do anymore. But it was so important for me. I felt like I was speaking on behalf of John to, you know, well do you know what, I’m giving these organs up. But I’m still a human being, I’m still a husband and a father.’
Shortly after John’s death, Linda and her son each received a letter telling them that John’s kidneys, liver and heart valves had been donated. One of the kidney recipients had experienced complications and the kidney had rejected. An eight-year-old child received the heart valves. Linda said she’d been unprepared for the fact that some of John’s recipients would be older than John himself. She found the first letter from one of the recipients particularly difficult to read, but appreciated the good that had come from the donation after the initial distress.
After John’s death, Linda and her son spent about two weeks at Linda’s parent’s home, and had a lot of support from family. She later joined a support group called the WAY Foundation, that aimed to support young men and women who had become widowed (http'//www.wayfoundation.org.uk/). Her employers were also supportive, and Linda was able to take five months off work and have a phased return when she did go back. Through her employer she received five face-to-face counselling sessions. Almost a year after John’s death, Linda said she gained comfort from a reading given by a spiritual medium.
Linda said that her son coped very well with the death of his father. In hindsight, she was particularly grateful to advice given by a health professional to involve him in his father’s death. Linda said John would be proud of their son, as she herself is.
Some time after John’s death, Linda became involved in raising awareness of organ donation and took part in interviews for radio and the local newspaper.
Linda believed her husband, John, would have wanted to donate. She felt strongly that families...
At the end of that conversation organ donation was mentioned, almost thrown in. And I don’t know if that’s down to people being sensitive or if it was just how that particular person just didn’t want to, you know, be full on and what have you. It may have been his way of saying it, but I basically said that I was happy to talk to somebody to find out more.
I’ve always carried a donor card from the year dot, however old you’re allowed to be when you say that you will become an organ donor. I’ve had an organ donation card. The thing that I didn’t know was whether or not John would agree with organ donation.
So my message, my biggest message, would be for people to talk about organ donation. To talk about their wishes, and of course their wishes might be that they would not wish to be an organ donor, which is fine. It’s a free country and we’re entitled to our opinions.
But I think I was in the middle of the most terrible, terrible situation, nobody could help me with that. We knew that we were going to lose John, and I was going to have to make the decision that I didn’t know if he would agree with. And I think that’s my biggest thing, has been my biggest thing, about the need to communicate. And to communicate with those around you so that actually if they were ever in that situation, they don’t have that extra bit, they need to be thinking about in terms of, well do we make those decisions or don’t we? The decision’s already been made.
I know from what I understand people can still decline the organ donation on behalf of their relative, but I wouldn’t imagine that happens very often, because the whole point is that you would want to carry out your loved one’s wishes. So, from my point of view, yeah that would be my biggest messages, is actually let those around you know what your wishes are.
I’m happy that basically John did become a donor, and I’m ninety nine point whatever percent sure that he would be happy with the decision that we made because he basically was a good, kind man who was logical; who would, I am sure, say, “Well, you know if I’m heading out of this world, and bits of me can be used to give other people life, then, or a better quality of life, then that’s got to be the a good thing. So I’ve never regretted it. I’ve never felt that I made the wrong decision.
The family said goodbye and Linda was the last one to see John. It felt unreal waiting for the...
I wanted to see the surgeons that were going to carry out the operation and [the donor coordinator / specialist nurse] said to me, “Oh, perhaps I haven’t explained things for you. Is there anything you’re not sure about…” I said, “No.” It was very, very important for me to see the surgeons, because I needed to tell them...how special John was.
Yeah...Yeah I had to tell them and [the donor coordinator / specialist nurse] was, [the donor coordinator] was fine. I don’t know that anybody had actually ever actually asked to see a surgeon before. But for me I just needed, there were a couple of messages that I needed to get across.
And a little while before, because we were quite a few hours from when the decision had been made. And the decisions had been made that John would become a donor, there were several hours, you know if it was midday, in the day time, it was actually at 8 o’clock the surgeons arrived in the evening, so it was that sort of time in between.
And it felt like a bit of a dream for a lot of those hours. It wasn’t really real until I was told they’d arrived. And then the reality kicked in. We’d said our goodbyes to John privately, individually, which was a fantastic thing that the co-ordinators did, allowed his sister’s time, and me time, and [my son] time just to sort of say our goodbyes privately. And then when the surgeons, when the time was getting closer and closer, that he would come off the life support machine, as I say I just needed to see the surgeon.
And we met in the corridor outside of where John was taken to. And this man let me tell him for sort of probably only five minutes, but he allowed me to tell him how special my husband was; that I needed him to be treated with respect. And they needed to take care of him because it was going to be out of my hands. I couldn’t do anymore. But it was so important for me. I felt like I was sort of speaking on behalf of John to, you know, yeah well, do you know what, I’m giving these organs up but I’m still a human being. I’m still a husband and a father, and all of that.
Doctors and nurses answered all of Lindas questions and always looked at her when they spoke...
There was a young doctor who basically was delivering me the news that he thought that it was highly unlikely John would survive what had happened. And that’s some pretty stark information, a) to receive but for the doctor to give it.
And throughout the whole time that any medical people spoke to me, they kept eye contact with me. Which actually at the time I suppose I didn’t necessarily really think about that, but afterwards realised just how important that had been. Nobody evaded my gaze. Nobody evaded my questions. They answered me as honestly as they could, given the information at different stages, the information they had, to know what they could, you know, if they knew something they would tell me. I was kept informed and involved throughout the whole situation.
They [doctors] told us that it would be very dignified, that it wouldn’t be frightening. [My son] was also in the room, and obviously for him, well I hadn’t intended for him to be in there. I think all parents want to protect and I felt that it would be better if he wasn’t there, until one of the medical team said to me that, whilst I knew my son better than they did, had I considered that if [my son] went from the hospital and his dad was, although unconscious still alive, the next time he would see me I would be telling him his Dad had died. And I hadn’t really thought about it like that. I just wanted him away from the pain of it all.
But I will be eternally grateful to that lady because I think, from [my son’s] point of view, he saw everything, really, the whole way through and was with his Dad when he passed away. And it was what they promised. It was dignified. It wasn’t frightening, and John just slipped, literally slipped away. And we could then just say our final goodbyes and come away.
So I have a lot to be grateful for generally. And I didn’t necessarily see it like that at the time. And I think that we were able to adjust to what had happened the best way that we could. And certainly from [my son’s] point of view there was no mystery. He understood what happened and was with his Dad to the end. They were very close, John was the main carer while I was at work. So they did have a very close relationship.
Linda praised the specialist nurse who told her about organ donation, answered her questions and...
From saying yes, I will talk to somebody [about organ donation], I then met [donor co-ordinator’s name] who was our donor co-ordinator [specialist nurse]. And a lovely, lovely, lovely person. As were all the medical people, because at no time were we pushed, cajoled, persuaded. We just weren’t. We were left to ask the questions, to have our thinking time, although the thinking time wasn’t a huge amount of time. But we had things explained to us and I can remember sitting with [the donor coordinator] initially, and we had a conversation about organ donation and what it might mean.
And then at a later stage, just a short time later, we sat with [son’s name], my son who was 12 at the time, with the intensive care nurse and discussed organ donation. And I think because I had started to believe that was the right route to go, I didn’t notice that [my son] had become quite, not distressed, but he was very worried and very sort of concerned. And the nurse picked up on that, which I thought was tremendous because she didn’t know us particularly. But she sensed that [my son] wasn’t happy with the discussion that was taking place or was worried about something.
And at that point she suggested that [my son] and I needed to be left alone for [my son] to talk to me, because there was obviously something that was worrying him. Which is what they did. They left us and I discovered from [my son] that he had become concerned because he’d got it the wrong way round. He thought that they would take the organs and then John would die, it would cause his death. So I was easily able to switch that around and explain it to him and then he was very much with the idea of John becoming an organ donor.
So at 12 years old, he was very much involved in that. And I think that was right as well. Were made then really. That, yes, John would become an organ donor.
Linda had five counselling sessions through her employer, which helped her understand some of her...
Through my work, I was able to have some counselling sessions.
Through your actual employer?
Through my work. Yeah, through my employer. Yeah, face to face sessions. I had five of those.
And I think that pretty much, the five were enough. They don’t solve, counselling doesn’t solve the problems, but I think it just gets you to understand why you might be reacting to certain things. I had a big thing about John’s death certificate. I’d got several copies, so one copy was the one that was going off in the post, and what have you.
And I sent it off to the insurance company, one of the insurance companies, and it was pristine and when it came back it was folded in half, had a staple mark in it. And I lost it, completely lost it.
And the counsellor said to me that she thinks that was because that’s my final document or, I can’t remember how she described it now, but it was that final piece of official paperwork, documentation whatever, that related to John. That obviously is very, very important to me, or to anybody in the same circumstances, but yeah I had quite an adverse reaction to the fact that it had come back, because it was disrespectful.
And throughout everything that I’ve had to deal with and people that I’ve dealt with, everybody has shown me absolute consideration, courtesy, understanding, support. You know, I have been extremely lucky from that point of view. But the counselling definitely just enables you, I think, to understand why you might be feeling a certain way. Why things, certain things will trigger you and other things don’t. So it was helpful.
I’ve got a tremendous organisation that I’m now joined to. It’s not to do with organ donation but it’s to do with being widowed and young, which is the WAY Foundation. And they have been a tremendous lifeline for me and for [my son], because we meet with widows with children. And there’s lots of events that go on, it’s nationwide.
But it is a tremendous organisation who are there to help and support and for you to just to know that you’re not alone. And that actually the feelings that you have aren’t strange, aren’t unusual. And the support mechanisms that’s there is absolutely second to none.
Linda found her husband, John, collapsed at home. The ambulance arrived quickly. She praised the...
For us it was something that happened totally unexpectedly. [My son] and I were coming home for me to drop him off at home before I went off to a friend’s to do a job for her. And we found John [my husband] unconscious in the hallway.
So we had no warning, no nothing. And things really unfold from there basically. [My son] ran to a neighbour, I dialled 999, you know and it literally just, things just took off from there and we originally, John was admitted to [name of] hospital, which is the local hospital for us, who were brilliant in every sense.
They obviously cared for him, and started to establish what had happened and actually it transpired that he’d had an aneurysm in the base of his brain, or base of his neck and this had ruptured or whatever happens in these situations. And that had led to two major brain haemorrhages, the like of which it was probably very unlikely he would survive from. But obviously there’s always hope and we were in [the local] hospital for some hours.
So you rang an ambulance? Did that all happen quickly, they came quickly?
Very quickly, yeah. Their response, in fact the operator on the telephone, my neighbour had arrived as I was talking to the operator on the telephone. She was talking us through getting him in the recovery position.
They sent a quick response car, which was the first paramedic to arrive, and then a full sort of ambulance arrived after that. But they were brilliant, the medical care, not just to John but also to [my son] and I, was absolutely second to none.
People, these paramedics had their job to do. They were, obviously their priority was discovering what had happened to John and to get him into the ambulance and whatever else they needed to do. But during that time they were keeping me as well informed as they possibly could, telling me what it could be.
Obviously they didn’t know and they explained that they were getting him to hospital, where they’d run tests. They’d started establishing what it wasn’t and what it could be.
But I can remember being treated like a human being who, in fairness, was not their priority, and they kept me up to date with everything both in the house and then when we went to [hospital name], there was a young doctor who basically was delivering me the news that he thought that it was highly unlikely John would survive what had happened.
Although Linda was desperate for doctors to consider every possible option, including a second...
Basically we were all day on the Sunday just really waiting and hoping and what have you. And then on the Monday morning I took [my son] in to go and obviously to go and see John, who was unconscious and who never regained consciousness.
And the nurse, the intensive care nurse said to me, “Oh the consultants wanted to see you when you come.” They wanted to be paged. So I imagined that that was not going to be a conversation that I wanted to have and it was probably going to be a conversation that really told me that there was no hope, and pretty much that’s what that conversation was.
And it struck me at the time, you know you see these things on television, and you watch people and wonder what might be going through their minds, and there I was. I didn’t know if I should ask for a second opinion, but if I asked for a second opinion, I was in the best hospital possibly in the country for this type of situation, with the best equipment, with the best neurosurgeons. Who was going to give me the second opinion?
But it was one of those things. I can remember sort of thinking, “What do I do now? I don’t know what I have to do. I just don’t know.” And I can remember asking the surgeon, or the, well he was a surgeon, if there was any possibility that they could have made a mistake, you know, could they have missed something. Was there something else that could be done and that they could check or do, and basically got the negative to that, that they had absolutely done everything they possibly could.
When Linda read that some of the recipients were much older than her husband, John, who died at...
It [letter] also gave us some information, anonymous information about what had happened with John’s organs. He’d donated both kidneys, and his liver and his heart valves, and that information was bitter sweet because I hadn’t been ready for somebody being older than John that was going to be a recipient. And I couldn’t quite grasp that idea.
I just imagined that it would be younger people. And then I can remember thinking well why is that fair, how is that fair that somebody who was older than John, who had lived for longer than he had, because John was 50 when he, literally we had just celebrated his 50th birthday two weeks later to the day he died. And I just couldn’t get my head around the fact that his liver had gone to somebody who was older. One of his kidneys has gone to somebody who was older. How could that be? That wasn’t fair.
Fortunately those feelings didn’t last for very long, but that was something I wasn’t ready for. I just didn’t think that was very fair. And then common sense takes over, and then you get back on the, what was the whole point of the organ donation? The whole point was to bring a better life for somebody else, a better quality of life, if not survival for them.
So common sense does come back into the equation and then you get it square in your head again. And it was fine. And it didn’t, those feelings didn’t last very long and, in some respects, I felt guilty for even thinking it. But the truth of the matter is that’s what I felt. I felt it wasn’t fair.
And, as I say, that common sense comes back and then you remember why those decisions were made. And effectively the whole the process was gone through, which is exactly what we wanted.
Linda realised after a recipient had a rejection that problems can occur after you have consented...
We wanted people to have a better quality of life. And then one of the other kidneys was successfully transplanted, but sadly there was a complication a short while afterwards. We don’t know how long and I’m not sure that I want to know necessarily that detail. I got very cross with God, because I just thought that’s, you know, that is not fair either. Because I’d already lost John and then somebody had had hope, and had a transplant and then it wasn’t to be.
But I think that’s what you also learn, in this road of organ donation, is that things don’t always go according to plan. And I had this whimsical idea in my head that if you wanted to be an organ donor, you just will be, you know, it will just happen. And if you want to donate your kidneys, they will be donated and then everything will be fine.
And of course it’s a lot more scientific than that. And there’s an awful lot of hurdles that have to be got over, and I appreciate that now. Which I didn’t appreciate beforehand.
But it still wouldn’t stop me, it still hasn’t stopped me from making sure that I’m registered now. And I don’t just carry a donor card, I’m registered on the central register because if it gives somebody a glimmer of hope and a chance, then that’s got to be worthwhile, because it could be one of my relatives that’s waiting for an organ.
So on that basis you’ve got to, you know, it’s got to be worth it. It’s got to be worth the rejection, as well as the, obviously the successful donations that happened for John. And his heart valve will go on, or has gone on to help a young child. I think she was about 8. And so on that basis, then you feel that some good has come from all the upset that we had.
Would you like to be kept informed, say once a year, or are you quite happy…?
I’m quite happy that that is now that, I think. Because I think if I found out that something else had happened to somebody, I don’t think I could cope with it. I don’t think I could cope with the sadness that perhaps part of John died all over again. So, no, I think for me I’m happy for things to be now where I don’t hear anymore.
Linda advises recently bereaved people to be kind to themselves. She felt in shock for about...
Be kind to yourself. One day at a time. I went round in a daze for I reckon about three months. I think I was in shock because, for us, it had been sudden. So there’d been no warning and nothing, you know, from being a happy little home, 48 hours from finding John, we were losing John. And it was all so quick.
So I think be kind to yourself, don’t expect too much. If on a day all you can do is get yourself up out of bed, get yourself breakfast and pretty much that’s about all you can cope with that day, so be it.
We don’t have to be superwoman or superman. I think we probably, there is a pressure put on people and of course becoming a widow, and I hate that word widow, people don’t see it. They see it initially and they understand that you’ve lost somebody and that that might have been also their friend or their neighbour, or their relative. But people’s lives move on and it’s difficult for them, for those around us, to understand the pain that you go through on a daily basis.
And I liken it to having a bag of sadness that I carry with me now. And some days that bag is just a little tiny bag and it’s very light to carry. And other days, and it could be the next day, it’s as heavy as a full suitcase. And time is not a healer. That is something I will never ever say to anybody ever again, “time is a great healer”, because I don’t think it is. My heart will never heal. It gets better, it’s got better, but it will never heal because we will forever have lost John and he will never ever leave our hearts at all.
But I think time, it allows you to adjust to your new circumstances, whatever they may be. And I think that’s why I would say just be kind to yourself. Just take every day bit by bit. And as time goes by, you’re able to deal with things in a better way, or it feels a little easier. But the grief comes back like a tidal wave so you can have gone for quite….
I mean I cried for every day for I think five months every day. And then I realised that I would go a couple of days and not cry and so that’s what I think time does. Time just allows you to just move on and adjust to your new circumstances.
Deciding to see a psychic medium is a very personal choice. Linda struggled with the idea of...
I do go and see a medium and I know that that type of thing isn’t for everybody. It’s a very, it’s very personal for all of us on whether or not we would enter into something like that now.
But I used to go and see mediums, oh for years and years, not particularly regularly and John [husband] didn’t believe in any of that. So he said that I used to tell, I would tell the person that I was sat in front of, and not even realised I’d told them things about me.
And I said, “Well it doesn’t work like that John, you just, you know you listen and you might say yes or no, and then that would be it.” And I really struggled with whether or not I would go and see a medium once I’d lost John because he didn’t believe in anything like that.
I was scared I think that if I went to see somebody, it’s the same lady incidentally that that I go and see, but if I did go and see someone, what if they didn’t tell me anything. And that would be terrible and then, but would I, but on the other side of that would I so want there to be something said to me, would it be, a bad thing to go and do in the first place.
So it was a very sort of, should I / shouldn’t I? And then a little while before it was the first anniversary, I decided that if I phoned her, because you have to wait quite a long time to see this particular lady, that if I phoned her and I could go and see her, then it was right. And if I didn’t, if I couldn’t see her, it wasn’t right to go.
And lo and behold she squeezed me in. And so I thought, well I reckon that’s the right thing to do. And I did go. I went to see her and I didn’t tell her why I’d wanted to see her, and she did the Tarot cards, as she normally does. And she couldn’t read mine. I’ve never ever witnessed her not being able to read the cards at all. And in the end she had to say to me that she didn’t understand why I was there because something wasn’t right. And I then told her that I’d lost my husband. And she said, “Oh I didn’t realise you were here for a spiritual reading. You didn’t tell me.” I said, “I didn’t tell you anything. I just said I needed to see you.”
And from there she gave me some information which, for me, there’s no way she could have known. Very, very clear things were told to me, and that for me has been a great comfort. I’ve not gone back and seen her since. I will do. I will go back and see her again. But I think that that, what she was able to tell me, and there were about four or five very distinctive things that she told me that nobody else would’ve known. There’s no way she could’ve known. I certainly didn’t tell her. And that was a huge, huge comfort to me.