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, physical needs, mental needs, or both, in a bed full time, fully dependant or semi- dependant? What kind of career do you have, full time or part time, remote from home, hybrid or always on-site, Monday to Friday or weekly shift patterns?

That was just the start, how about these. Are you a couple or single, 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 talking about an adult, is there assistance if needed, 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 above it can vary greatly. However what I do think is fair, is for me to use points from my own experience as an example and let you decide the barometer.

Maintain a Career

We live in a time where getting and keeping a job is becoming increasing difficult, and building a career is about constant reinvention of ourselves. To do that requires that we have 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 that we put more time in than usual, more effort than the rest do, seeking more of ourselves and even studying. Regardless of what we think the road to any success is not easy.

Working from home

Working from home is great for so many reasons. It allows people to cut out the travelling and spend that time working or being with their family that bit longer.

However, there is a challenge for some to know when to switch off or they may actually miss meeting and interacting with other people, or distractions may take place. Things in the house, or as in the case of this article someone with complex needs being cared for.

Just imagine you are lucky enough to be able to work from home full-time, but you have someone who is heavily dependant on you and is also home full-time, how do you make something like this work?

Going to a place of work

If working from home was not tricky enough, having to go to a place of work regularly is also not an easy task. If you have a dependant who is home bound then who looks after them? If they go to school then who takes them and picks them up?

Managers can make a huge difference in working arrangements and this can vary if they are flexible and understanding. One thing I noticed is that managers who have families of their own are able to understand these circumstances easiest and can relate to an extent how situations with our dependants can quickly escalate.

If the above is not in your favour do you eventually have to consider going part-time or giving up work?

Adding complex needs into it

When someone with complex needs are in the picture, it is important to understand how quickly things can change and how to make best use of time. Before you know it simple situations can become time consuming or overwhelming.

These things seem to happen at the best of times, when you are about to go on a work call or better yet you are already on a call.

In my situation when working from home I feel like the older Luis gets the more challenging things are with him, and his attention span is shortening. Things we were sure that would keep him occupied for a period of time are no longer a guarantee.

Looking after Luis requires not stop attention, some readers of this article know Luis well and will understand exactly what I am saying. 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 and I condense a days works into the hours he is not here, it is tough going but possible. The days Kristina works from home make it easier as we can both help each other when Luis is back from school. Antonio is still young, but can be so independent and Eva is much older and neither need constant supervision like Luis.

The unexpected

Expect it! Last year as an example Luis was ill almost every couple of months, and he stayed home several times, vomiting everywhere, grumpy, clinging on to us and unwilling to be by himself. He also had seizures that wore him out and he just kept sleeping afterwards so he missed school.

Hospitals! We experienced it several times with Luis, hospital stays in the summer in the winter in fact almost every part of the year for high fevers, bronchitis and pneumonia that lasted several days or more. Over nights in hospitals are very exhausting, can be noisy and if the nursing team do not think you are a priority to have an available room, then you share an open ward with other sick and sometimes inconsiderate people.

It is not possible to experience any of the above or similar and have the physical and mental capacity to work the same or next day.

Dealing with holidays

There are things that I did not initially think about in more depth, like school holidays and how to have them covered whilst working. These seem to come thick and fast with schools, and the provisions in place to support working parents with children who have complex needs are not enough.

We have some hours provided by the local authority to use for care but by far not enough to cover the entire holiday or even half.

Sleeping

Sleep deprivation leads to a lack of concentration, performance, tiredness and possible health issues, in fact such is the effect it is used as a means of torture.

Why mention this? If like us your dependant is likely to be up in the night regularly whether in short bursts or longer you start to feel the effects. Some nights it seems like you mostly sleep, others some sleep and then there are nights where there is little to no sleep.

Considering the options

As I said at the start there are so many paths depending on circumstances that it is not possible to say which is right or wrong. But consider the above.

At what point does a person feel like enough is enough they cannot take everything that is going on at the same time!! Work, trying to get ahead, caring for someone with complex needs, family and other commitments. How can they possibly focus on a career and do it all?

It is possible for the bold and determined but that does not mean that it is any easier. For many it may that they decide to stop pursuing a career, go part time or even give up work because it feels impossible otherwise.

If there are two of you then the decisions can be slightly less complicated but still complicated. Who gives up work, or who goes part time, dare I say it who is better with the dependant? Can you afford to go part time, bills, rent, mortgages, basics, holidays, the future are always there staring you straight in the face whether you are standing or lying down.

Conclusion

Can I honestly say there is a conclusion, no absolutely not!! What is very clear is that pursing and maintaining a career whilst looking after someone with complex needs, will require some serious sacrifices, strength and good managers. There are different paths to be chosen by those in this scenario and I am currently on mine.