– By Tamara Church

Last year, Tamara found herself becoming a full-time carer to her boyfriend at the age of 29. This Carers Week, she shares her story, gives advice to others in a similar situation and tells us how she has set up her own business to take her mind of her daily caring duties.  

I was one of those individuals who one hot summer welcomed the ‘ALS Ice Bucket Challenge’ as a daring and fun activity to do, to cool ourselves down and donate to a good cause. Fun was had, money was raised, time moved on. One thing I didn’t do at the time, was research what the cause really was. That ALS is actually another name for MND which is the abbreviation for Motor Neurone Disease – a disease which is terminal and causes the body to shut down progressively. Most importantly a disease for which there is still no cure!

Fast forward to 7 years later and I find myself at 29 years old, a full-time carer (a role which naturally has progressed over the last year) to my 34-year-old boyfriend, who was diagnosed with MND at the start of 2020. Let’s say I am now fully aware of the devastation and cruelty this disease brings.

The day I’ll never forget

Somewhere between that Ice Bucket Challenge and diagnosis I had met my boyfriend in Glasgow, travelled the world together, worked in Australia and returned after 18 months away to be reunited with our family in Scotland. Only a few weeks after returning, he noticed a significantly weaker arm and then grip when lifting weights in the gym. After several GP appointments, we were eventually referred to Neurology for testing and 18 long months later we were given the diagnosis that we had suspected quite early on.

Although suspected for quite some time, the heartbreak when hearing the news from the professionals is something I’ll never forget. The fact that our future together is being taken away from us at a relatively young age, brought about much anger and upset amongst all of the other emotions of anticipatory grief for the both of us. I try to keep my ‘matter of fact’ mind set for the majority of the time, but there have been several occasions where I’ve cried myself to sleep at night or have broken down in an appointment.

What’s most important

The pandemic has been a blessing in disguise for us, due to the fact I was put on furlough from my recruitment role for a few months and so could earn while spending precious time together and care for him at home in Glasgow.

Being a full-time carer, the biggest challenge has been the mental journey of watching someone you care for essentially fade away in front of your eyes and the responsibilities of care naturally increase. You learn what the most important things in life are and who, what and where you want to spend your energy.

MND Scotland has been an incredible resource for us and they have provided counselling services, funding for equipment and advice in helping us to find appropriate accommodation – all aspects we may have struggled to finance by ourselves.

A good ole blether

Through this journey my greatest support system has been my family and close friends, generally by having a good ole blether, more so to take my mind off the daily caring struggles. To give myself a new focus and channel that energy following redundancy, I decided to come up with a small business where mental health was the priority.

During lockdown, it was apparent that everything was online and so through a bit of planning and research, ‘Blether Box’ was born. With everything MND related surrounding us in our daily lives, it was important that MND was not the main focus.

Blether Box is a box of home baking with 4 Blether Cards that provide random questions to encourage new and exciting conversations to take everyone’s mind away from grief and struggles for a moment in time. I have enjoyed testing the questions out with my boyfriend in advance and the project has certainly lifted spirits for both of us while at home. Having this side project has been great for me to work from home to be around to provide care through what I know is an ongoing journey.

Blether Box has now supplied some businesses who were looking for something a bit different to approach mental health awareness while working from home. I’ve just passed the 7 month mark running the business from home and I look forward to planning a fundraiser with Blether Box for MND Scotland in the near future. So keep an eye out on our Facebook and Instagram, and more than happy for any general enquiries to be sent to bletherbox22@gmail.com.

You’re not alone

My advice to any new MND carer regardless of age, would be to join the ‘MND Collective Carers’ page on Facebook and similarly reach out to MND Scotland to see how they can offer support. Often as a carer you can feel alone and as though your problems aren’t valid in comparison to the sufferer. However they are problems that affect you all the same and so this facebook group has been so warming to meet so many MND carers who know exactly what each other is going through and can provide advice or notes of encouragement when times get rough.

There is so much learning involved along this rollercoaster of a journey with countless appointments, new faces and routines to get used to. The most important thing to remember is that you are not alone. Young or old, we are out here dealing with not only the restrictions of a pandemic, but this awful disease together. Whether (like my boyfriend) you prefer a little privacy or you are more open to speaking out about it, there are devastatingly around 5000 people in the UK that are living with the disease at any one time – meaning that the disease is categorised as ‘rare’.

Being so ‘rare’, never did I think that a young human being who went to the gym, worked, travelled the world and enjoyed outdoor adventuring could be affected by MND, but here I am writing a piece from a carers perspective. ‘What are the chances?’ I often ask myself, that something this horrendous could affect us. Yet I also ask the same question when I have put on the odd lottery ticket in the past. With that said I think I’ll go and put on another ticket, just because, well… `What are the chances?’

If you are caring for someone with MND in Scotland, we are here to support you. Head to our Carer’s Hub to find out more, or get in touch with us on 0141 332 3903 or email info@mndscotland.org.uk.