Taking Care of the Caregiver: Coping with Loss Before and During COVID-19 by Jemima Thompson

This blog is part of a special issue, released for World Mental Health Day. At Voices of Academia (VOA) we strive to make sure your voice and experience is heard. Dealing with loss is complex and an additional strain on our mental health during the academic process. The blog was recorded as part of a conversation between our guest, Jemima Thompson and Marissa Edwards (one of the VoA team) earlier this year. The blog is in two parts, and there is a link to the second part at the end of this post.

From Jemima: Since this interview was recorded in April, I sadly lost my father to COVID-19 the following month. In light of this devastating turn of events I wish to dedicate this interview to him and his memory, and to all of those who have experienced the loss of a loved one during one of the most challenging times in living memory.

Part 1: The Start of the Journey

Jemima (J): I’ll start in the beginning and how I  ended up in academia because I think that’s an important part of the story for me. So, I’m 32 now. I came to academia quite late. It wasn’t like I went from 18 went through the Bachelors, the Masters, and a lot of people have taken that route where they’ve just stayed in academia the whole time. I’ve been in and out and done all kinds of weird stuff.

The reason that I ended up where I am now is partly because of what happened previously in my life. My PhD is in medical education looking specifically at doctor-patient communications and patient-centred care.  The thing that made me feel that this is so important and why I want to do this was that my husband had multiple sclerosis. He was diagnosed when he was about 24 and he died about five years ago. During that journey and all of those hospital appointments, I learnt about all of the multidisciplinary stuff that’s going on and the complex, complicated connections between healthcare professionals and the community and hospitals and even inpatients/outpatients.

There were so many times where people like, doctors, nurses, physios, whoever said things that I just didn’t like or that I thought, “That’s inappropriate or I don’t like this and why aren’t you listening when I tell you things?” Then towards the last couple of years of his life, I was unable to look after him myself and I’d moved back home. But in that time I was doing my Masters in health psychology and there was lots of stuff about doctor-patient communications I was like, “This is so interesting because this is what my life is.

That was happening and then he passed away in August 2015. And at that point my life had been on hold a little bit.  I’d been doing odd jobs and I’d done my Masters but everything was a bit weird and I didn’t know what to do. He died in August and in January I’d had a bit of time and just thought, “I need to do something with my life”. I needed to do something useful, and that’s how I ended up in research.  I applied for a research post as a clinical studies officer, we call them in the UK.  It’s entry-level research and that’s mostly things like data collection. You’re doing assessments with participants and this was with the NHS. So it’s a mental health trust dealing a lot with dementia, schizophrenia, personality disorders, all that stuff and it was so interesting.  At this point I still had this interest in communications and but wasn’t sure what to do with it. 

It was when I was working so I moved over and was working on a trial called Radar which is Research into Antipsychotic Discontinuation And Reduction. Try saying that when you’ve had a drink. So the patients are people who have been on antipsychotic medications for a long time and it’s trying to see how people can manage if we start to take them off. And beyond the medication itself when I was interviewing these people and doing these assessments, what kept happening was they kept saying things like, “My doctor doesn’t listen to me and my psychiatrist doesn’t listen, no one’s hearing me” and I’m sitting there going, “I get that.” I really related to their experiences from that point of view.

So I was plodding along doing my research and loving it and then ended up applying for a funded PhD at UCL in medical education, specifically doctor-patient communications, and I was like, “This is it. This is the thing. This is what I’ve been waiting for.” and seemingly my enthusiasm came through and here we are sort of 18 months later. Now I’m about halfway through and I still find it fascinating every day. But in terms of mental well-being now, I have sometimes struggled with that, what it’s brought up for me and the things that it’s made me remember about my own experiences.

Marissa (M): Wow, what a journey. Were you aware when you started the PhD that it might bring up those emotions and those memories for you?

J: I think so. I knew part of the reason that I was interested in it was because of my own personal experiences. I think for a lot of people, particularly in health research, often when you speak to people they’ve had some sort of experience that made them want to go down that path.  So I knew that it was still going to be there and when I first started in research it was only a few months after he’d passed away. And it was still very much my identity at that time.

Whereas now I think it’s more a part of the tapestry of all the things that happen to you in life. And so, it’s not my defining feature, that’s something completely different now, I suppose. It’s still there but not in same way. I think I knew that it was going to make me think about that and remind me of the stuff that happened. It actually made me remember stuff that I’d forgotten.

So it’s been from that respect quite the journey.

M: Yeah, I think in the email that you sent about being part of Voices of Academia, you said that you felt quite lost when your husband passed away in that he’d been the centre of your life. So how do you think that you negotiated that journey from the loss? What would you say your identity was when you commenced your research? How would you describe yourself?

J: Good question. So I guess when I went into research after he passed away, at that time I was just… I honestly don’t know. I don’t think I really was anybody. I didn’t feel like I was anybody. I was trying to process this trauma that had been going on for a lot of years and I guess I just didn’t know what to do.  But I knew I had to do something and go, “Who am I? Figure this out.” And I thought that maybe, a job is big part of one’s identity for some people and I suppose that, for me, it was something that I could do now that he wasn’t here. I wouldn’t have been able to do it while he was still here.

And again, I was still, like, I’m not really sure what this research stuff is about and I thought it was all about stats and numbers and that made me sad because I’m not a big “statsy” person and then I discovered qualitative research. So I guess at that time I don’t really know. I don’t think I can   say who I was then, and it’s almost like I didn’t really feel anything.

At that time like everything I had gone through… I spent about two years before he died in tears and sobbing. By that point it was just gone. I had nothing left. I was just existing at that time. I drank too much. I partied too much.  I don’t think I had an identity at that point.

Part 2:  Carer Responsibilities and Grief

M: While all of this was happening, were you closely involved in your husband’s care? Were you one of the primary carers or…?

J: Yes. So things were so it was a bit tricky, so when we were first together and we got married, he was unwell, but he managed and could look after himself. After that he just got a bit tired and struggled on his feet a bit.  But his MS was particularly aggressive in a way that all the people that I’ve met with MS, I’ve never seen anybody go through what he went through in such a short space of time. He would have really defined relapses but also have this progression happening all the time as well. So you would get this slow deterioration and then just a bang, “Okay, we’re in hospital, we’re on steroids, we’re doing this, we’re doing that“, and I was still working. I was working in a pub then. I was managing a pub and so I was working weird hours on top of that.

And then it was in 2012 he went into hospital for a stint of neuro rehab. At a hospital that we hadn’t been to before for rehab but we thought, let’s give it a try and in the four months that he was in there he deteriorated. So the day he went in he could wash himself, dress himself, shower and so forth, and by the time he came out this was when everything changed. By the time he came out they’d said we would need to get rid of all the stuff in our flat because we would need a hospital bed. We would need electronic wheelchairs. We would need hoists. We would need carers four times a day because he needed toileting and personal care. And I just couldn’t… and by that point I’d lost a lot of weight. I couldn’t really eat. I didn’t sleep. I was about seven and a half stone. I think it’s about 45 kilos.

M: Yeah, roughly.

J: I was a mess and that was when I think I was really emotional with lots of crying. I think one of the main things that I really remember was when they said you have to take away your marital bed and we have to put in this hospital bed, and we had to go out and find me a bed.  And there was a hoist, sling hoist at the end of our bed and having an air mattress and having catheter bags.  You feel like you’re in the way in your own home because you’ve got carers coming in and out four times a day, so I was very involved and I had to give up work to look after him and after about six months of this I was going crazy.

M: Of course! That sounds so hard.

J: Actually this [COVID-19] isolation situation is actually, I hate saying triggering, I think it’s just a horrible word, but it reminds me of that trapped animal feeling that I had then. So I started doing little bits of work and his mum lived around the corner from us so she was able to come and look after him while I would do things so I got a part-time job in a theatre. I did a couple of shifts a week and started my Masters because I thought that’s only one day of lectures a week and then everything else I can do at home. I wanted to learn. I still wanted to be doing things and I was running Brownies as well.

So all the outside stuff I started picking up more and more to distance myself from being at home and being in that situation. And after about 18 months I just couldn’t cope anymore. So we agreed that I would go back to my parents who again live not far away, only about half an hour, and he would go back to live with his mum and she would look after him. But during that time as well our sister-in-law passed away in the middle of all of that from cervical cancer. If it was on [a television show], you wouldn’t believe it!

So she left behind two young children and my husband’s brother and this was while I was still living there but looking after him full-time, but he was in hospital. He’d had surgery sort of like a week before so he was in hospital and I had to go and tell him that his sister-in-law had died. So his mum’s having to go and deal with his brother and it just was all so much. You try and deal with it, but his family had gone through all this tragedy and then there’s me going, “I can’t cope, I can’t do this” and it was the guilt that I felt and still feel by saying I couldn’t do this anymore that’s haunting. So I would still go there twice a week, on Thursdays and Sundays, I would go to give his mum a break.  So I’d still go twice a week and if he had an admission into hospital or whatever I would go and visit and after work, before work, whatever. So I was still quite heavily involved, but just not living there and not being in it.

But yeah, the guilt that I carry has never gone away. But just towards the end he was under hospice care for about the last 18 months, but it was hard because he didn’t know he was dying and never accepted that he was dying.  So all the conversations that we had to have between me and his mom, we had to have away from him because we couldn’t… also cognitively he wasn’t really… it was almost sometimes like talking to someone with dementia. You’d have the same conversation over and over again because he just didn’t remember, and he was blind by then as well. He couldn’t see and he also ended up with being tube-fed. He couldn’t swallow anymore. We had a few times when we had to call ambulances because he was choking and that was pretty unpleasant.

M: This sounds like an incredibly hard time.

J: So he was in and out of hospital and in and out of the hospice a lot in that last sort of year and a half. And then by the end he ended up in intensive care, which that’s a whole thing in and of itself, but that was pneumonia, which he’d had like three times before and kept surviving and we couldn’t understand how but this time he was intubated. He was in intensive care and there was a legal issue with the ventilation, coming off that and moving him to the hospice to die there. So as you can probably understand, I was not really much of a person by that time. I was quite heavily involved in his care. And once he’d gone, you don’t have big part of your life and that big thing that you were doing is just gone.

M: Yes. What a distressing time for you. And so what did you do?  How did you cope?

J: I threw myself into work and started working just like a demon, six, seven days a week. Just saying yes to any shift. I was still working at the theatre at that time and I was also doing some part-time work with the local charity in their like Health Department doing cancer awareness in schools and local communities and stuff. So I would take any work that was going, I just took it.

M: Spending two days a week is a huge commitment when you’re dealing with someone who’s so severely unwell. It sounds like it was still a very significant part of your identity. And as you said when you lose that everything changes.  I’m not surprised you didn’t really know who you were at the time, that makes sense.

Jemima: Yes.

M: Thank you for being so articulate and sharing that.

J: Yes, I know it’s not exactly what you wanted in terms of the academic stuff, but I think it’s a big part of how I ended up where I am.

M: Absolutely. What you’re saying is really, really important. I think that a lot of people will relate and I think it’s interesting in the way that your experience has guided you into this PhD.

Part 3: How Loss and Grief Shape Identity and the Academic Experience

M: Moving on, are there any other ways in which you think that your experience has maybe helped you as a PhD student?

J: I suppose it’s what’s given me a bit of the drive and motivation.  I think anybody, if you’re doing a PhD, you know you’re not going to change the world, but you can do something. To me it’s about going, “I couldn’t do anything then but maybe I can do something now.” Maybe something that I can say or I can do might do something for one person, one day and if that happens then I can be happy that I’ve made a positive impact on someone else. So I think in that respect it has, yeah, it has   shaped how I approached the PhD and why I wanted to do it. Everybody has different reasons for going through the PhD process. And for me, I think a lot of it is a personal journey as much as it is a   career choice. I think it’s shaped how I view it in that way.

M: Yeah. Also, it sounds like your identity has changed from when you lost your husband.  How would you describe yourself now, if you had to describe your identity now?

J: I’d say that I’m a researcher. I am happy, most of the time. But I’m not the same person that I was. I don’t have the same level of confidence that I did. I think when you’re younger it can make you arrogant, I guess. And I definitely had this attitude, very like, “I don’t care what anyone thinks, and I’ll say what I think.” And what’s changed about me is that I take a bit more time to think about things before I say them. Or I think about what’s the most appropriate thing to say in this particular situation to this particular person. So I used to be this really bold person and I think that’s still in there, but it’s much more muted. But again, I don’t know if some of that is just to do with getting a bit older and I’m not 21 anymore.

M: That’s true.

J: But see the world a bit differently. Even stupid things like when you see something on TV about somebody making a choice to leave their disabled partner for whatever reason and maybe ten years ago I would have been like, “That’s ridiculous.” But now I’m like, “Actually no I can understand that; the how and the why and actually, things aren’t always black and white.” I’m probably a much more considered person now than I once was. And I am a researcher and it feels like I’ve found a place in the world a little bit.

M: Yeah, that’s great. I guess the passing of time has probably helped a lot as well in that too.

J: Definitely. I think time is a big factor and just as you go through life, people enter it and people leave it and some people, you drift apart from, other people you make a conscious choice to leave, and other people are taken away from you. So I guess it’s just part of that process of life.

M: Yeah, that’s true. Do you find that you draw on your experiences when you’re doing work that’s relevant and you’re doing the research relevant to your PhD? Do you, I guess, do you talk about your experiences with colleagues in academia?  Is it something that still influences you?

J: So it’s a funny one because there are things within my data, there are certain things that bring things back. So part of the data set I’m looking at is about breaking bad news and some of the conversations that I’m seeing are distressing, and there was one particular scenario about somebody needing to be potentially intubated and being at the end of their life and that sent everything flooding back.  But I try not to let it affect me. I suppose you’ve always got your biases and particularly in qualitative research you need to think about the fact that it’s objectively subjective. So you have to be aware of your biases. I try not to let it influence how I’m interpreting data. But I think it is something that I’ll have to   mention in my thesis that I’m a person and I’ve had experiences and so you’re going to have these knee-jerk thoughts. But generally within academia, I haven’t really spoken about it in any great way. It was about a year in before I told my supervisor anything that happened.

It just didn’t feel like it was relevant at the beginning. So obviously when we were interviewing for the PhD, she asked about my academic achievements and my roles and asked me about research and what I’d been doing so it didn’t come up.  It didn’t seem relevant and actually it all come out in this weird moment of supervision of her just going, “How are you?” and I was like, “Actually I’m not okay today” and explained why and she went, “That explains an awful lot about who you are and why you are the way you are. It contextualizes for me why you are doing this.

M: Definitely.

J: And I get very anxious now, which I never used to be. I was always so confident. But now I’m much more, “I’m going to fail”, “I’m rubbish”, “I can’t do this”, “I’m just stupid” and “How did I end up here?” and all the imposter syndrome stuff. But I have mentioned to people, as I’ve got to know them and conversations happen and you go, “Oh, well when my husband was alive, this happened and that happened” but I’ve never sat down with anyone and said from start to finish like, “This is the experience that I had.

As I’ve been going through this journey, I have been thinking as an academic maybe people do need to know about this, actually because I think that it’s not just me. I think there’s probably a lot of academics and a lot of people out there for whom part of the reason that they are where they are is because something happened in their life that made them take a particular path. I don’t know if I would have been in research or if I would have had anything to do with any of this had I not been through this journey. So when I saw your opportunity to talk about well-being and talk about people’s journeys in academia, I thought, actually this is may be the platform for this. Because again, you start to wonder would anyone be interested in knowing about these things?

M: Yeah.  I think that for a lot of people, I think that there’s probably some personal interest in the topic. But I think that people do choose topics they’re emotionally invested in. I don’t think that’s a bad thing. You need to be passionate about the work. But I think that often there’s a deeper reason why some people choose certain topics. But that’s a really interesting question to explore.

You can read Part 2 of Jemima’s story here.

Jemima Thompson

Jemima is a PhD student at UCL Medical School. Her research focuses on doctor-patient communication, with a focus on patient-centred care. She has a background in Psychology and had worked previously as a researcher in the NHS. When not focusing on her work, her hobbies include volunteering with Girl Guiding UK as a Brownie leader and cross stitching.