My postdoc and my dad’s dementia

This carers week, Dr Lia Chappell writes about expectations, and her experiences in combining a research career with caring responsibilities.

By Dr Lia Chappell, Postdoctoral Fellow in the Cancer, Aging and Somatic Mutation Programme at the Wellcome Sanger Institute

I’ll sum up my reason for writing this blog post in the first line: I want to contribute to the discussion about how there should be more than one way to structure an academic career, and about how requiring multiple moves between countries or even cities excludes people for reasons that might not be obvious. Not everyone wants to or can do two major geographical moves before setting up a lab, and I want to encourage as many people as possible to question that narrative. I’ve read blogs discussing the “two body problem” of academics in couples finding it difficult to find good jobs in the same location, but I’ve not found any blogs discussing situations similar to mine. So I decided to write one.

“So what’s your role now?” The main point said, I’ll backtrack to give some context. I’m doing a Postdoc at the Sanger Institute, and I currently work on molecular biology methods for single cell sequencing. So far so good, but when folks ask the next set of obvious questions about where I’ve been before, a predictable set of questions and assumptions tends to jump in…

“So where were you before?” I did my PhD at the Sanger Institute, getting a molecular biology protocol to work to measure gene activity (a flavour of a method of RNA-seq that we called “DAFT-seq”) in the human malaria parasite Plasmodium falciparum.

“And before that?” I did my undergraduate and master’s degree in Biochemistry, at Emmanuel College, Cambridge.

These are the kinds of follow on questions that people have asked afterwards. And with hindsight, the answers I wished I’d given more often than not.

Q1:“Oh, so you must really like Cambridge then?” (A1: It’s quite nice, but there are other places I’d also like. I don’t dislike the place, but that’s not the main reason why I still live here.)

Lia Chappell at Emmanuel College, University of Cambridge

Q2:“Are you worried what will happen if you change labs?” (A2: Nope. I’ve been in five different labs since I started Sanger, including more than a year in DNA pipelines, which is very different from the scientific programmes. I’ve also been in four different programmes, each of which has had very different styles of science and leadership.)

Q3: “Do you have kids?” (A3: Should it matter if I do? I don’t, but I think that’s beside the point. As though this is a “valid” reason that I’m “allowed” not to move. And on top of all that, I’ve only been asked this since around the point I turned 30…)

Q4: “Do you not want to run your own lab then?” (A4: Over-extrapolation from the data provided! Which I think is built on the premise that if I was really serious about being a group leader I’d have made different choices, as I’m not following the classic path of moving twice between countries.)

Q5: “Are you scared to move countries?” (A5: There’s so much to unpack there that it’s probably a whole other blog article. For now, let’s just say that if you saw me unleashed to a new place with a phrase book, a map and an excuse to interact with the locals that you probably wouldn’t ask that question…)

Maybe you think some of those questions are reasonable to ask someone you know well, and maybe you don’t. But I think all of them are pretty intrusive from someone that I met two minutes ago in the line for coffee at a conference. Being asked these questions still happens very regularly, to the extent that I’m more surprised when I manage to get through a whole conference without someone asking at least a variant of one of those questions. When I’d moved from PhD to my first job at Sanger I used to gently duck them and move the conversation on to something else. Now I almost always address these questions head on, with the intention of both breaking the taboos around the subject and making the other person think twice before they make the same sort of assumptions again…

So why are you still at Sanger? As you asked nicely with an open ended question, I’ll give you a direct answer. In two parts.

  1. I want to do world-class genomics in the south of England, and I think there’s few who’d argue that Sanger is a terrible choice here. I think it’s actually pretty good.
  2. I want to be in the south of England so that I can easily get back to family as my dad goes through dementia. It’s much easier to handle if I can get home regularly without too much forward planning.

The “D” word (Dementia)

That second point tends to stop people in their tracks. Some folks briefly share that someone close to them has been through this too. I don’t need to share the whole story with everyone I meet. But I’m happy to talk about it. Others are horrified that they accidentally brought up the subject, and will do anything to end or redirect the conversation. If you ask me too many intrusive questions in a row I don’t think it’s unfair that I make you briefly uncomfortable.

Dementia is an umbrella term to describe a range of progressive disorders where the nerves slowly become damaged to the point where the brain can’t function anymore. The most common is Alzheimer’s disease, but there are many more, which basically reflect which part of the brain is damaged first. I’ve added some links to the end of the blog that are excellent sources of information for patients, family, friends and colleagues.

My dad’s diagnosis was dementia with Lewy bodies, which has the confusion most people associate with Alzheimer’s disease, along with some of the movement difficulties that overlap with Parkinson’s disease. People with Lewy body dementia tend to live about 6 to 12 years after symptoms appear.

Me, my dad and dementia

It’s okay to ask me about what that experience was like. But I can tell you that it’s hard to listen to, so I’ll be brief so as not to make this section the last you’ll read, on account of intensity overload. My dad died last summer, about 11 years after the first problems with movement were recognised and about 10 years after it was “officially” diagnosed as Lewy Body dementia. Around five years ago he needed more care than we could give in our family home, and moved into a specialist dementia care home. I can’t say enough nice things about the people who were staff in the care home, it must be an incredibly hard job. 

To give you a flavour of my experiences, I’ll pick a comparison that I think might be something many of you are familiar with. It’s basically the reverse of watching a small child grow independent in the world. A couple of years ago I was watching my friend’s toddlers take their first independent steps, be able to say their first sentences, and zip up their own jackets. At about the same time I was watching my dad no longer be able to do those things, and have to rely on others around him for help. I watched him slowly fade away over a decade, with there being little I could do but be there for him and for close family. It totally sucked, and I see no point in being indirect about that.

That decade was also the ten years that covered half of my undergraduate degrees, my PhD, and three other roles at Sanger. At the beginning I barely talked about it, as the changes in my dad weren’t necessarily obvious to others, and didn’t necessarily make too many changes in my day to day life. But the small changes accumulate and creep up, step by step. At what point should I talk about them? One of the hardest steps was signing the paperwork that meant my dad wasn’t legally capable of making his own decisions any more. But that followed many smaller ones, like moving sharp knives and keys he might lose.

People often assume that the hardest year was the one running up to when my dad died. For me it wasn’t. The hardest year or two were the ones just before he moved to the care home, where he needed more help than we could give, but wasn’t willing to accept that. And in particular the eight months we spent at the top of the waiting list desperately hoping for a place to become available at the care home. I was about a week away from quitting my job to move home when a place finally became available.

With hindsight, I view the whole experience as something like a hurricane blowing through my family’s life. The beginnings of the storm were when symptoms first appeared. The eye of the storm was probably the year where we made the decision to put him into the specialist care home. And almost a year after he died, we’re still rebuilding the damage after the storm. I think we’re still figuring out what the new normal looks like, even though it’s been around five years since my dad lived at home.

The experience has definitely changed how I view life. For a number of years I’ve really tried to make sure that I don’t let being in touch with the people I care about slip, as you can’t predict the future. Writing in the spring of 2020, there’s much uncertainty about how to plan for tomorrow and the future. My family lived with uncertainty for almost 12 years, and it’s definitely changed how I view what’s happening now, and hopefully leaves me better prepared with how to help others through this than I would have been otherwise.

The other “D” word (Depression)

It’d feel like an omission not to talk about another complicating factor that made my dad’s dementia much harder, both to deal with directly and to talk about. That’s depression. My dad had this for almost 30 years in total, of which the last 11 overlapped with his dementia. My dad regarded it as something he shouldn’t talk about, based on attitudes in society when he was growing up. It’s only in the last five years or so that I’ve even mentioned it to anyone but those closest to me, but thankfully attitudes are changing fast. Why do I mention it here? Because in the early stages of my dad’s dementia, talking about it felt similar to discussing his depression in public. Too taboo, too private, too uncomfortable. I’ll be glad when society gets to the point that we can discuss both openly.

Career choices

I made the decision to be within reach of home not long after the official diagnosis, at the point I was thinking about applying for PhDs. I applied for a bunch of them within the south of England, and accepted the place at Sanger, which is the one I wanted the most. The most obvious choices for after PhD all involved moves that would mean I was dependent on a combination of flights, coaches and buses all working to be able to get home. I decided that I wasn’t willing to do that regularly over what would probably be the worst years of my dad’s dementia. Distance to home really mattered in the last 18 months or so when he stopped being able to use a phone to talk to me.

For me at least, I decided that I could live with an unconventional career path more easily than not being able to be there for my family when it counted. What surprised me is how much everyone else has an opinion on that choice, or at least the most visible parts of that choice. I understand that variety in scientific training is generally a good thing, but I’d argue that two nearby labs that don’t work together can be more different than two geographically distant labs whose science overlaps more closely.

What helped and would have helped?

Hopefully it’s obvious that this part is subjective, but it might make it easier to begin a conversation with someone in a similar position.

Open questions: the simplest advice I can give is to ask open questions, like “how are you?” or “how are things with family?” with time for the other person to answer. Hold that pause for slightly longer than you might have done. They might not want to talk about it right now, but if the space to answer a question has gone before they’ve had time to think about it, the odds are that they won’t give you an answer unless there’s a pressing need. Which means that you’d only hear about it when it becomes urgent (and they can’t make a deadline or have to leave work immediately).

Escapes: it really helped me to have parts of my life that weren’t connected to what was happening at home. That could be work, or friends that wouldn’t talk about it unless I brought it up. Equally important were the friends who would ask me directly, even if I didn’t bring it up. I needed both. I still count some of my past colleagues as good friends today.

Quotas: a concept heavily borrowed from the blog post “The Awesomest 7-Year Postdoc or: How I Learned to Stop Worrying and Love the Tenure-Track Faculty Life”. I had hard quotas for time at work, weekends in Cambridge, weekends with family, and time spent visiting or meeting with friends. It helped with the closest I got to balance, and was a defence against total burnout.

Knowing that there’s more than one way to do it: every story of someone who’s not followed a “classic” path is an antidote to the narrative that there’s only one way to succeed at academia. Time will tell what I’ll do after this Post Doc, but I stopped caring quite a while ago about what “other people” think about what I should do!

People that I could trust. You know who you are, and I probably still owe you a beer or cake or seventy of them as thanks for your time and kindness. Some of you will have proof read this article. Thanks again!

Thanks for reading this far. I hope that it might be something to use as a catalyst for conversation. Do get in touch with thoughts or questions!

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