An Exclusive Look At The Challenge An Unpaid Carer Faces
An Exclusive Look At The Challenge An Unpaid Carer Faces
As part of this year’s Carers Rights Day on the 24th November, I have taken over my wife’s blog and am going to provide an exclusive look at life as an unpaid carer, how I manage the challenge of balancing demands on my time and energy, and what has changed as our relationship evolved to include caring for one of us with a chronic illness.
When Laura became chronically ill in 2014, read about this here, and it eventually dawned on me that my role as Husband, Father, best friend and confidante would now be expanded to that of prime and unpaid Carer, life would become a little more complicated, especially as this would need to be balanced with being the main financial provider in the household.
My role as unpaid Carer covers a wide variety of tasks and activities. I will try to distinguish these from the roles of Husband and best friend, though I have to be honest, this is often difficult to do!
As an unpaid Carer for Laura, I need to consider her needs at all times, ensuring that her physical needs are met and that I am aware of those needs at all times of the day and night. At a very basic level I need to ensure that Laura has taken her medicines, eaten regularly, has access to clean water and is washed and clothed every day.
I need to ensure Laura can access essential services, such as getting to a toilet safely. I need to be there to help if she falls or passes out, getting her to safety or calling the emergency services if needed. It sounds very mechanical listing it out but this is how I can distinguish my role as unpaid Carer from that of husband. As the person I love the most and have chosen to spend my life with, she is much more than just this list of needs.
In addition, as Laura’s condition impacts her cognitive function, I handle the more complex elements of her care and help her organise and attend medical appointments and understand the risks and potential benefits of procedures to help her make decisions right for her.
As well as helping Laura with the more complex elements of her care, I also help her in her role as equal partner running the household, making sure she can perform her role in key decisions around finances, household maintenance, childcare and the general running of a family.
I also help her to understand what is happening when, and what decisions need to be taken. As an unpaid Carer, I need to be mindful of Laura’s needs, breaking complex information down into easily understood pieces so she can make decisions that affect her and the family.
What A Normal Day Looks Like For Me
After my alarm I ensure the youngest is on track for college, then I’ll have a quick shower, and while brushing my teeth will check my work emails and calendar for the day.
My first caring concern is making sure Laura has her breakfast ready to take her medicines, so will prepare her favourite toast and marmalade, a cool cup of tea (too hot could burn her, or worse still melt a medicine capsule and release some horrid flavours!) and take her breakfast upstairs, to where I often have to wake her.
I’ll turn on her light, place everything she needs within reach, making sure the handle of the tea cup is where she can’t knock it over. I will then ensure she has her medicines, checking that she takes them, and has enough water for the morning.
Only then will I move onto my needs, getting dressed and ready for my day. Once she puts on her lifeline device, and has taken her medicines, I know she’s safe to be left as her medicines mean she often sleeps most of the morning.
We are really lucky and have a paid Carer who attends daily around lunchtime. Read about how Sam fits into our team here. On the days when she is on holiday, or at weekends, I will give Laura a cup of tea close to lunchtime, and put out her clothes for the day, and prepare her some lunch.
On the (thankfully) rare occasions that her condition and pain levels flare up, I will need to help Laura to shower, wash her hair, help to dry and dress her, as well as help with her access to her variety of beauty and medicinal creams.
Throughout the day I am on hand to pick things up that Laura may have dropped, handle some cat related incident, or answer any questions when Laura is struggling to understand something. As her Carer I’m there to listen to her emotional needs, be patient when her pain affects her mood, offer a listening ear, and a giggle or a hug. These are essential parts of caring for Laura and their impact cannot be underestimated.
Let’s not forget our sons. Eldest is now at University but youngest may well need picking up from college early, or late, depending on his schedule. I’m also there if he needs my taxi service for any appointments or social engagements.
Later I will prepare dinner, again something our paid Carer will have prepared or put in the slow cooker. and sort any washing, cleaning or household task that needs doing. I normally give the youngest the job of delivering Laura her dinner, which saves a trip up the stairs.
Once we are all tidied away after dinner, I like to enjoy an evening watching TV with Laura, where we will chat about our day, catch up on anything important and just enjoy each other’s company. Before bed-time, I ensure Laura’s bed is re-made, she has her nightwear to change into, has taken all of her medicines for the day and has enough water to drink. I make sure she has a small packet of biscuits to combat nausea if it comes on in the night, and that she has her ‘ice hat’ which she normally falls asleep with, as it helps manage her pain.
As Laura can at times be prone to passing out, I tend to sleep lightly, always being alert to when she uses the toilet or if she needs me in the night. Should anything happen, as her unpaid Carer I can help to get her to safety.
Did I mention work? I am very fortunate to be able to work from home, and have access to work communications on my mobile phone too. As a Systems Director I manage a small team of data managers across Europe. It is complicated work, and draws upon my many years of experience.
I have many virtual meetings with people around the world, periods of intense concentration, people to support and invariably problems to solve. I tend to think of my working hours as 8am - 4pm but this flexes as needed around my caring responsibilities. I am always able to catch up in the evenings in that window between dinner and time with Laura.
My main responsibilities as an unpaid Carer are that Laura’s needs are first known and understood. These change daily and it is so important to never assume I know what these needs are, but rather ask Laura to ensure her voice is heard and that her needs are shaping her care.
Then it is to ensure these needs are met, from medication, food, water, cleaning, clothing to medical appointments, setting up household systems and communication with the family and support network. As Laura’s prime Carer, being with her and on hand to help 24 hours a day I take it as my responsibility to consider how I can help to meet these needs wherever she requires my help.
How Caring For Laura Impacts My Well-being
Having hopefully painted a picture of how my day-to-day life works, and my main caring responsibilities for Laura and our family, I also have to think about myself! The transition to accepting the role of unpaid Carer for my wife has not been an easy one. Realising that our family life would be changed forever affected me tremendously.
I am quite a positive person, always looking for solutions and trying to find the best in every situation, but seeing the person I love the most in so much pain, and their life going from a busy Mum and teacher, to being bed-bound and struggling with the simplest of things really hit hard, especially as I felt so helpless.
Being Laura’s unpaid Carer has been hard emotionally, and my mental wellbeing has suffered. Adjusting to a new life, while grieving for a lifestyle lost, with all the freedoms and spontaneity being compromised by putting someone else’s needs first took me through a difficult emotional journey.
Finding my role as Carer, however, gave me a focus and activity that I could understand in helping to work with something I couldn’t find a solution for. Realising that being an unpaid Carer was my way of helping, coupled with being the Father/Husband/Earner helped me to reconcile with a problem that I couldn’t solve, and adjust slowly to our new life.
I have always been able to find positive perspectives, and I am thankful that I still have my wife, that we are together and we’re able to support each other through this transition in roles, and most importantly provide strong role models for our sons.
My physical well-being has suffered a little over the years, especially as my work is quite sedentary, being office based, and with the onset of years and being overweight I am definitely not as fit as I used to be. When your partner is mainly bed bound, inevitably time spent together is also a sedentary experience too. So a renewed focus on fitness and activity is my latest goal in trying to address my well-being needs, and make sure I am fit enough for me, and importantly for Laura too!
How My Caring Role Affects My Work-life
My work-life as an unpaid Carer has had to become ever more flexible. As I say, I am very lucky in that I can work from home, and flex my time around work and caring responsibilities.
The main thing though is that I have to be a strong and confident advocate for my needs. What I mean by that is that I am always clear and confident in communicating how I will be the best employee while also balancing the needs of those who rely on me.
I am always open and honest about my role as an unpaid Carer and when I am available and not. My employers don’t suffer from compromising with the time I need to dedicate to my caring duties. In fact, my employers benefit from my perspective, approach to prioritising, time management and ability to focus wholly on any problem or solution I work on.
Being aware of ‘reasonable adjustment’ rights in the workplace is also something that has served me well. When I became a Father I worked compressed hours to care for my sons one day a week, which was so valuable to us as a young family, with high childcare costs. It ensured we felt we had balanced time and it became a real cornerstone for what I wanted in my work life, especially as an unpaid Carer for Laura.
In the past I have been able to represent the needs of parents and Carers in setting up and running an award-winning colleague network, something I will forever be immensely proud of, as well as being a role model for other leaders with caring responsibilities.
What My Support Network Is Like As An Unpaid Carer
My support network is small but strong. I have relied at times on my father-in-law for contingency taxi or childcare. My emotional support though is what gets me through the tough times, with close friends to lean on, and becoming close to Laura’s paid Carer.
I am also part of a band, and music is such an escape valve for the hurricane of emotions I balance in my life. The release it gives me to just have to think about the next note in a song, comfortable in the knowledge that Laura is happy and safe, means that the emotional elastic band gets a chance to flex and not snap.
Most importantly though, is the network of support we have created as a family. We focus on the positives of life, balancing against the challenges and we remain solution focused. It feels like we work well as a team, each supporting the other. As a whole our family life is happy and fulfilled, which nourishes us all as we each achieve our ambitions.
If I Could Have One Wish Granted To Make Caring Easier…
I would wish that all of my wife’s illnesses and conditions would be alleviated and we could go back to a time where chronic illness was not a part of our family life. This is not wholly true, though, as we have all learnt so much about who we are as individuals, what great teamwork looks and feels like, and how we all can work together to succeed in the face of adversity.
Having the role of Carer is a badge of honour and pride for me. I feel like I am helping my wife succeed in being the best version of herself, and that my role as her unpaid Carer also helps me be the most resilient, empathetic, understanding and above all most caring version of myself that I can be.
A Powerful Perspective Of Life As My Unpaid Carer
It’s been wonderful, challenging and entertaining to read my husband’s perspective about his role as my Carer, especially being one who isn’t paid at all. It’s eye-watering to read about the list of jobs he has to do in the morning before work, whilst I lay sleeping or waking casually to the smell of toast. I can honestly say I’ve never thought of it that way and this will hopefully help me to be more patient and show my gratitude even more than I do already.
My lack of awareness comes from both being in bed, isolated from the real world for the majority of the time, and due to my brain condition. My brain reacts to the extra pressure in my skull, the same way it would if I had a brain tumour so I can struggle to see things from others perspectives unless they tell me repeatedly how they feel.
I also think it’s partly down to the husband-wife relationship. Come on, you know we don’t always listen to what our spouse says! However, Joel hasn’t told me about a lot of what he’s written here about how he felt transitioning into the role of an unpaid Carer.
I was very unwell at the time and could not hold a conversation or retain any information. Thankfully my brain surgeries have allowed this aspect to right itself quite well so I can now take this on. I just wish I’d asked Joel how he felt more, I knew he was struggling of course, but I didn’t know how much.
I too am able to look at the positives of our situation now and know we’ve been able to teach our sons so much more about how to flex and grow to cope with challenging situations. As a team, we’re unstoppable and that includes my paid Carer Sam, who often acts as my proxy in the physical activities of running a household. I couldn’t be prouder of Joel and the boys for how they cope with ALL the challenges they face as unpaid Carers.
I would like to thank Joel for taking the time to write this piece, guided by my questions that came from this year’s Carers Rights Day campaign. Each year Carers Rights Day helps carers in the community know their rights and find out how to get the support they’re entitled to. The West Sussex Carers Support page says:
“This year our campaign will focus on the ways in which Caring Costs unpaid carers. From carers' well-being and ability to access health services, to costs to their finances and employment options, to the current cost of living crisis which is being felt even more acutely by carers throughout the UK.”
National Carer support organisations that help unpaid Carers know their rights are:
Carers UK
Carers Trust
The UK government also have support materials for Carers
There is also information on the new Carers Leave Bill that was passed in October 2022 here. We’ve found our local carers organisation very helpful, and highly recommend searching what is going on in your local area this Carers Rights Day.
Finally I want to publicly share how grateful I am to Joel for everything he does for me, everything he sacrifices and mostly everything he does to put a smile on my face, and my son’s face every single bloody day. He is an incredible human being and I love him even more after reading this article. In our 25 years together he has only ever shown me kindness and generosity and this seeps through the words on the page here. I am so honoured that you’ve shown another side of me to those who take time to read this blog. I appreciate you taking even more of your precious time to write about your perspective as my unpaid Carer
✋ Hey there! I hope you’re feeling stronger now. If so, sharing the love will help me help other mums with chronic invisible illnesses.⬆ Hit one of those sharing buttons or save these images to Pinterest and I will do a bed-bound happy dance - there's an image for you!
