Studying Abroad as a Caregiver

Okay, so this is probably somewhat out of place here - but I hope it will find the people who need it most. What I am sharing is so brutally personal - it feels like I am ripping pages from my diary open to read it to strangers. BUT when I applied for my master’s abroad, I desperatley wished to find someone with a similar experience and backstory. Since I didn’t find one, I decided to hopefully become that person for someone out there.

So, if you are a young caregiver wishing to study abroad, this is for you. I hope this helps!

Dreaming about going abroad

Today, I wrote my foreword for a master’s thesis I never thought I would write. I wrote this in another country, 1,428 km from my hometown. Three years ago, this thought would have filled me with an evil conscience, while leaving me so numb and sad because I knew that it would never be possible.  

I always wanted to study abroad; ever since I started my Bachelor's, I said:

“I'll do my Master’s somewhere else”

But sometimes life has other plans, so when I was 21, my mom had a spontaneous brain bleed, which she barely survived, leaving her severely disabled. For the following years, my life revolved around hospital visits, taking over the responsibility of someone else’s life, handling finances, court appointments, and, I guess, coping with the loss of how I knew my mom while accepting a new version of her. My dream of studying abroad was so far gone, not even Katy Perry would have seen it in Jeff Bezos' space shuttle. I thought it was simply impossible to leave, go away, and put myself first. Like many other caregivers, I was losing myself in care work, constantly struggling with the feeling of not doing, not being enough, while feeling so guilty to even think about following my own life plans.

After I finished my Bachelor’s, I was looking for a Master’s, secretly checking out programs abroad, to end up even more upset that my life felt so out of my control. When I told my boyfriend and half-sister, I was so surprised that they told me to go. I still remember all the guilt that I felt for even advocating this idea.

But thanks to them, I applied for a Master’s in IT and Learning in Gothenburg. Don’t get me wrong, handing in this application terrified me; I even hoped they would reject me. I felt so tremendously guilty for trying something that meant leaving my mom, whom I was even legally responsible for.

So, why did I apply?

Honestly, I have no idea. I guess it was a mix of me knowing that if I had kept living my life the way I did for the last years, I would continue being a shell of who I was before my mom got sick. I struggled with my mental health, had depressive episodes, panic attacks, and almost drowned in guilt every time I did the slightest thing for myself. But with loads of therapy, I realized that it might be okay to keep living my life, even though my mom’s life looked so different now and kind of depended on me. So, when I applied for this Master’s, I did not feel ready and decided not to think about it until I got the selection notification. For those who don’t know me, I am a type A person when it comes to life decisions. I plan big life decisions usually with pros and cons lists, but this felt so terrifying that I pushed all my thoughts far away. I told myself that if I saw the result, I would know what I wanted to do – of course, that did not work out!

Being accepted - what now?

When I got the message that I was in, I felt all the feelings simultaneously: happy that I got in, excited to go on a new adventure, terrified if I could mentally handle that challenge, worried about how I could still care for my mom. I, of course, had no idea what to do. After a million talks with my boyfriend and half-sister, who assured me that it would be good for me, that it was okay to leave, that I am allowed to live my own life, I kind of convinced myself that this could be a good thing. After a lot more conversations with my therapist, I decided: I want to do this.

So that was the backstory to where I am now. And while I know that everyone’s backstory is different, everyone copes differently with the responsibility of caregiving, I want to share how studying abroad felt like as a young caregiver. Because when I embarked on this terrifying journey, I was desperately looking for young caregivers with the wish to study abroad to see how that could even look like – and I guess I still am.

I think there were three main questions that I asked myself, which I am trying to answer as honestly as possible here.

Is it okay to leave the person you are taking care of?

I honestly can’t answer this question. I concluded that I will never find the right answer. I keep asking myself if it is okay or not to put myself first. Part of me says yes, because it’s my mom who got sick and not me, that I am allowed to live my own life, and that I need to take care of myself, actually to be able to give back again. Another part of me says no, because my mom spent all my life taking care of me, and I love her, so I want to be by her side. I am also responsible and need to coordinate her life, because who else would do it? So, if you ask yourself that question, you must find an answer that works for you. I think the tipping point for me was realizing how bad my mental and, by then, physical health was. At a certain point, I decided I needed to change something, because that was not what I wanted my life to be. I don’t believe there is a right or wrong here, and I certainly think any outside judgment or opinions should be muted instantly. (If you are an outside person - don't even weigh in unless you are saying that you will handle the caregiving part!) You need to make this decision for yourself, but maybe my workarounds and thoughts will help to make that decision.  

I found ways to connect with my mom, which was extremely helpful. Every other week, the nursing home did a video call, and I told my mom all about the things I am learning here, the friends I made, and the beauty of Sweden. It was not much, but it made me feel connected, and I got to call my mom, and that felt so right. Sometimes I recorded a voice message and asked her nurses to play it for her, or I sent her a message I would read when I saw her again.

Also, before deciding to go, I made sure to have enough money to go home now and then. For example, for Christmas, I went home and spent it with my mom and the rest of my family, which felt so good! Or during the summer break, I went to pottery therapy with my mom.

So, there are other ways to be around – you never leave a person completely. Maybe you just need to be creative in how being close to your person could look.

However, to keep this as honest as possible, I want to say that being able to go abroad took a tremendous amount of work! I did every kind of preparation possible to make sure my mom was taken care of. The last two months before going abroad were intense. I prepped emergency lists, contacted all doctors and agencies to ensure they knew how to reach me, and organized who would be the first to be by her side if things got tough. I did all that because I wanted to give up the legal guardianship, because it weighed on my mental health so severely. Surprisingly, I prepared my time abroad so well that the court made me keep the legal guardianship, because I “seem to care so much”. I was so disappointed at first because I had worked so hard to free myself from the legal burden, and I just wanted to be my mom’s daughter again so badly. But life had other plans again, so I turned into a remote guardian instead. Nonetheless, this prep work freed me up in ways I hadn’t anticipated. Of course, this is a privilege. I was able to organize care for my mom without being there, because she was living in a nursing home. And I will always be tremendously thankful for anyone who stepped up during that time to make it possible for me to leave. The point I want to make is that I did not think that it was possible at first, but it turned out to be – so maybe that could work for others as well?

What if something happens and I am not there?

This is a tricky one that almost prevented me from going abroad. I think my half-sister asked me that: “So, Sonja, what happens?”. I didn’t have an answer back then, but I guessed the same thing would happen: If I were home, I would leave and be with my mom.

I was in this situation twice – I got a call from the doctors saying, “It's time”, and if I wanted to see her again, I should go home. Before coming to Sweden, I knew this was a possibility, that this could happen at any moment or time, and I had also gotten that call previously. But when I got that first call, I broke down. I was unprepared for how being so far away would worsen it. So, I guess, all the freedom I felt before came with a price, and that was it.

So, what did I do?

This was me, really exhausted, when we realized that my mom would be okay

I bought a way too expensive flight ticket, packed up the most important things, and was on a flight home within two hours. I don’t want to sugar coat it, this was one of the worst days of my life, I was begging so hard that my mom would survive until I was home, I cried desperately on the plane, couldn’t eat anything on my layover and rushed straight from the airport to the nursing home. Luckily, my mom had amazing friends, so when I arrived, there were already four friends by her side, holding her hand, talking to her. The doctors have no idea how, but she made it through, which left me pretty much doubting if my rushing home was necessary (of course, that thought evoked a whole lot of new guilt in me).

So, when I got that call half a year later for a second time, I was unsure what to do.

Do I rush home and leave everything here behind to be with my mom? Or are the doctors wrong again?

I was torn, but decided I couldn’t live with myself if I were not there if she were to pass, so I packed my stuff again and went home.

So, what I am trying to illustrate here is that it sucks to be far away if things get worse. But if you are planning for it, putting away money that ensures you can hop on an overpriced flight, then do it. I can’t say it will feel better, but being aware that this might happen and knowing that I can afford to go home instantly if needed, made going abroad a lot easier for me.

What is it like to live abroad as a caregiver?

A mix of everything – for me, it was a combination of extreme guilt, while simultaneously tremendous relief. Saying that feels weird, but I nearly drowned in the aim to be the perfect caregiver at home. I wanted to do everything right, be there for my mom as best as possible. That left me exhausted. My batteries were constantly empty because I felt like I had failed every time I was not sitting next to her. So, when I stepped out of the plane more than a thousand kilometers away - for the first time in years, I felt like I did not need to feel bad because right now, I can’t just hop on the subway to see her. And that thought felt freeing as fuck!

At first, it was so weird to have time for myself, but I began taking up hobbies, finding new friends, and delving deep into schoolwork. And with time, I realized that my batteries were getting fuller and fuller, and so did my life here. Honestly, I hadn’t seen many of my friends in the previous years because I was too exhausted, but suddenly, here in Sweden, I was hanging out with new people and started to feel great about it.

Don’t get me wrong, at times, I was sad, I missed my mom tremendously, and I just wished to be closer. But mostly, the distance freed me up to work a bit through what had happened. It showed me how much the responsibility was weighing me down, how bad my mental health was at times during the last years, and I started to feel proud of how much hard work I had done to be able to go abroad. A big part of this was having the opportunity to stay with my home therapist.

When I prepped my time abroad, I only prepped one thing for myself: ensuring I could keep going to therapy. If you have that option, do it!

Going away stirred up much new stuff for me, and while I decided to take some breaks in between, knowing that I could take a therapy session at any time was such a safety blanket for me.

Looking back on those last years, since I first found the master’s abroad online, to now, almost finishing my thesis, I can’t describe enough how I feel that this was the right move for me. I was desperate to look for the right decision when choosing to take that chance or not, but I’m guessing there is never a right or wrong if you are a caregiver wishing to go abroad; there is just the decision that works for you. Part of me still feels guilty for not being by my mom’s side more often. But simultaneously, I am so thankful that I did go away, because it showed me that I am more than a caregiver, that I have my own life worth paying attention to, and that I am indeed more than my shell.

So what's the conclusion?

Going abroad while having caregiving responsibilities is never an easy decision. I doubt that there is anything close to right and wrong. For me, it was weighing out the good and the bad, trying to see if my life at home was what I wanted my life to be. But I would not be completely honest if I didn't mention the final reason that made me go: I did ask my mom if she was okay with me going abroad in a very clear moment. I was so nervous, and even though she had such a hard time communicating clearly, she vividly signalled yes to that question multiple times. And I guess that was the final argument I needed to make my decision.

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There is one more question I wish I wouldn't be able to answer, but I know it's one that some of you may be silently asking too...

What happens if the person you are taking care of dies while you are abroad?

So, that one may be a bit too fresh for me to go into much detail, but that second call from the nursing home was the final one. When I came home, I got to spend another whole week with my mom. We celebrated her birthday, and I got to tell her how happy I was in Sweden before she passed. I can’t express how thankful I am for hopping on that flight for a second time! I doubt that I would have ever forgiven myself for not being there when she passed. Being home during that time was beautiful (I mean however beautiful such a situation can get...) since I had my loved ones around me and could just be there for my mom.

On the other hand, returning to Sweden was not easy breezy, as you can imagine. I flew back two days after my mom’s funeral, which, looking back, I would not recommend to anyone. As bad as it sounds, at first, I felt nothing but relief when my mom passed. I got to say goodbye most beautifully, and initially felt so free and alive. However, going back, away from my loved ones was hard. I felt incredibly lonely, I struggled with loss of appetite, was so exhausted, got constantly sick and was just sad. Luckily, I already planned a vacation long before, so that kept me positive. 

Afterwards, I decided to spend some time at home, because I just couldn’t manage well in Sweden. Fortunately, I didn’t have to be there, since we barely had classes to attend during the last semester. So, I stayed home for the next 2 months, which felt much better. But even if we had had classes, I think teachers would have been open to accommodating me in that situation.

Since returning to Sweden, it's been a mix of emotions, ranging from complete sadness to feeling happier than I have ever been. I guess everyone copes very differently with death, so again, we're discussing a very hard question. At least now I know that it’s good to put yourself first and do what you think you need. I also know that somehow you will cope – losing a loved one you took care of for years is always twisted and confusing… I guess I am trying to figure out what’s good for me and go with that, because I think my mom would want me to be happy even if she can't share life with me the way we both imagined.

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If you are in this situation, please feel free to reach out ❤️ I know this can feel so freaking lonely, but it doesn't have to be. I wanted to share my story to help, because that is something that I would have loved to read when I made this decision. If this post even reaches one single person in a similar situation, I guess my emotional striptease was worth it. And if not, maybe this helps open the discussion of what being a young caregiver feels like.

I hope this helped, Sonja