Is it possible to maintain a career when looking after someone with complex needs?

Where do I start with this, when there are so many scenarios before we even begin? How complex is complex? Are we talking about physical needs, mental needs, or both? Is the individual in a bed full-time, fully dependent, or semi-dependent? What kind of career do you have—full-time or part-time, remote from home, hybrid, or always on-site? Is it Monday to Friday or weekly shift patterns?

That was just the start. How about these questions: Are you a couple or single? Do you have family to offer support or not? If we are talking about a child, have they been allocated a SEND school? Is there transportation in place, or are you doing the school runs? If we are discussing an adult, is there assistance available if needed? What about help with basic daily needs, socialising, or trips outside? Medical appointments? You get the picture...

It would be unfair for me to say which one of these scenarios has the most difficulty. As you see, it can vary greatly. However, I think it’s fair to use points from my own experience as an example and let you decide the barometer.

Maintaining a Career While Caring for Complex Needs

We live in a time where getting and keeping a job is becoming increasingly difficult. Building a career often requires constant reinvention. To do that, we need focused minds and enough energy to fulfil our roles to the required levels.

Person working at a desk with a computer, a cat, coffee, lamp and paperwork. To the right is a bookcase.

Getting to the top, or even just above where we are, sometimes requires us to put in more time than usual. We need to exert more effort than others, seeking more of ourselves and even studying. Regardless of what we think, the road to success is not easy.

Working from Home: A Double-Edged Sword

Working from home is great for many reasons. It allows people to cut out travel time and spend that time working or being with family. However, there are challenges. Some struggle to know when to switch off. Others miss the interaction with colleagues, and distractions can easily arise.

Imagine being fortunate enough to work from home full-time, but you have someone who is heavily dependent on you and is also home full-time. How do you make something like this work?

The Challenges of Going to a Place of Work

If working from home isn’t tricky enough, having to go to a workplace regularly presents its own set of challenges. If you have a dependent who is homebound, who looks after them? If they go to school, who takes them and picks them up?

Managers can make a huge difference in working arrangements. This can vary greatly depending on their flexibility and understanding. I’ve noticed that managers with families of their own often understand these circumstances best. They can relate to how situations with our dependents can quickly escalate.

If your manager isn’t supportive, do you eventually have to consider going part-time or giving up work altogether?

Adding Complex Needs into the Equation

When someone with complex needs is in the picture, it’s vital to understand how quickly things can change. Simple situations can become time-consuming or overwhelming.

These challenges often arise at the most inconvenient times—like when you’re about to go on a work call or, even better, when you’re already on a call.

In my situation, as Luis gets older, things become more challenging. His attention span seems to shorten. Activities we thought would keep him occupied for a while are no longer a guarantee.

Looking after Luis requires constant attention. Some readers of this article know him well and understand exactly what I mean. He needs someone with him at all times to ensure his safety and that of others.

When Luis is at school, the house is quiet. I condense a day’s work into the hours he is not here. It’s tough but possible. On days when Kristina works from home, it becomes easier as we can help each other when Luis is back from school. Antonio is still young but can be quite independent, while Eva is much older and doesn’t need constant supervision like Luis.

The Unexpected: Always Be Prepared

Expect the unexpected! Last year, for instance, Luis was ill almost every couple of months. He stayed home several times, vomiting everywhere, grumpy, and clinging to us. He also had seizures that wore him out, leading to more missed school days.

Hospitals! We experienced several stays with Luis—during summer, winter, and almost every part of the year—for high fevers, bronchitis, and pneumonia that lasted several days or more. Overnight hospital stays are exhausting. They can be noisy, and if the nursing team doesn’t think you’re a priority, you might end up sharing an open ward with other sick and sometimes inconsiderate people.

It’s impossible to experience any of the above and still have the physical and mental capacity to work the same or the next day.

Dealing with Holidays: A Constant Challenge

There are things I didn’t initially consider in depth, like school holidays and how to manage them while working. These breaks seem to come thick and fast, and the provisions in place to support working parents with children who have complex needs are often insufficient.

We have some hours provided by the local authority for care, but it’s far from enough to cover the entire holiday or even half of it.

The Impact of Sleep Deprivation

Sleep deprivation leads to a lack of concentration, poor performance, tiredness, and potential health issues. In fact, the effects are so severe that sleep deprivation is used as a means of torture.

Why mention this? If, like us, your dependent is likely to be up at night regularly—whether in short bursts or longer—you start to feel the effects. Some nights, it seems like you barely sleep. Other nights, you might get some sleep, and then there are nights with little to no sleep at all.

Considering the Options: What’s Right for You?

As I mentioned at the start, there are so many paths depending on circumstances that it’s impossible to say which is right or wrong. But consider the above.

At what point does a person feel like enough is enough? When do they realise they cannot juggle everything—work, caring for someone with complex needs, family, and other commitments? How can they possibly focus on a career and do it all?

It’s possible for the bold and determined, but that doesn’t mean it’s any easier. For many, the decision may come down to stopping their career pursuit, going part-time, or even giving up work altogether because it feels impossible otherwise.

If there are two of you, the decisions can be slightly less complicated but still challenging. Who gives up work? Who goes part-time? Who is better suited to care for the dependent? Can you afford to go part-time? Bills, rent, mortgages, basics, holidays, and the future loom large, whether you’re standing or lying down.

Conclusion: The Journey Ahead

Can I honestly say there is a conclusion? No, absolutely not! What is clear is that pursuing and maintaining a career while looking after someone with complex needs requires serious sacrifices, strength, and good managers. There are different paths to be chosen by those in this scenario, and I am currently on mine.