My Mum, Linda, and I were very close. Even after I moved to Valencia in Spain in 2011, I regularly came back to the family home in Takeley, and Mum often came out to stay with me in Spain.
It was in January 2015 when Mum was diagnosed with a brain tumour. Mum had gone to her GP because she had developed a small crease at the side of her mouth, and was then sent to have a scan. I got on the next plane from Spain and went straight to Broomfield Hospital where I arrived in time to be with mum when she received her results, along with Mum’s friends Kath and Charlie who had taken her, for which I was so grateful.
I just remember the consultant saying that there was nothing they could do to cure the cancer because of the location of the tumour.
“It just felt like a huge bombshell had been dropped on us. In that moment, it was so tough, and I just sort of fell apart.”
You never think that you’re going to be in a situation like this, it’s just not something you plan for.
Fortunately, over the next few days and weeks, there was support available from Maggie’s, a cancer care charity which is located on the Addenbrooke’s hospital site, and I learnt of the support available from St Clare Hospice.
Becoming a ‘Carer’
“All of a sudden I was thrown into this role of ‘carer’ for Mum, instead of just being her son.”
I didn’t think of myself as a ‘carer’ at all, just a son doing what any son would do. I didn’t use the term ‘carer’ to speak about myself until much later, when I reflected on what happened. I was just doing exactly what was natural for me to do, which was to be there for my Mum and do everything I could to support her and make the last remaining months of her life the best possible.
“My whole life changed overnight from the moment of Mum’s diagnosis. I didn’t return home to Spain, and moved straight back in to the family home to be with Mum.”
I had left my partner back in Valencia, as well as my business, a small estate agency firm, and I had to just up and leave them all. I ended up giving my half of the business because I was dedicating all my energy to Mum.
Literally everything I did was focused on my Mum – doing activities, trips, a multitude of doctors and hospital appointments, medication, making adaptions to the house; as well as doing all the cooking and housework. I remember people telling me to be careful of my own health, but I was more worried and focused on Mum’s health.
Finding support at St Clare
We received a recommendation to speak to St Clare Hospice about how they could support us, so I got in touch. Mum was referred to the Wellbeing Hub where she attended a course, one day a week at St Clare in Hastingwood, for several weeks.
The whole experience at St Clare was really positive. From the moment you walk in to the Reception, to the people who work in the kitchen, to the staff and volunteers you meet.
“The whole Hospice has a really good energy about it, and you come away from there feeling that energy. It’s an amazingly happy place.”
The staff and volunteers in the Wellbeing Hub were all incredible. They really showed their warmth and love towards my Mum. I know they made her feel special, and she felt loved.
The Wellbeing Hub’s ‘Living Well’ programme gave Mum the opportunity to mix with others in a similar situation to her which had a lot of benefits – realising you are not alone, and having others who understand around you. Making those connections really meant a lot to her.
“Being at St Clare’s just made Mum feel so good about herself.”
They did activities together that Mum would tell me about. I remember one where they wrote down positive things about each other, and shared them. Mum was so chuffed. For her, especially at such a critical time in her life, that was really touching. Mentally, the Wellbeing Hub programme helped Mum so much.
Help for me too
One of the hardest things when caring for Mum was dealing with all her medication, especially the steroids which the hospital gave me a certain amount of responsibility for adjusting. When I dropped Mum at the Wellbeing Hub I was able to speak with the Hospice staff and ask for their advice. It was ideal that on the one Hospice site you had access to specialist doctors, nurses, physiotherapists and occupational therapists, all there to speak to.
I also called the 24-hour advice line on a number of occasions, to speak to the Clinical Nurse Specialists and ask for advice on how to manage Mum’s symptoms. When you are at home, on your own, trying to care for someone who is very sick, it’s so important that you know there is a number you can call at any time, to ask for help and just get some advice.
The Wellbeing Hub also helped me in simple, but really important, ways. Like giving me the time to go and do the food shop from the supermarket for the week. I couldn’t leave Mum on her own in the house, so St Clare gave me the opportunity I needed to take some time for myself.
I knew that Mum was safe at St Clare, and having a good time, which meant I could relax a bit and take my time, instead of rushing around.
“It’s simple, small things like that – being able to go to do the shopping – that you don’t realise, until you are in that situation, are affected. Your whole life is affected by becoming a carer.”
“As Mum’s cancer progressed it became harder and harder on me. For about 3 months I didn’t sleep, or had extremely disturbed sleep.”
Mum’s brain tumour affected her orientation, mobility, and sense of time and place. So she would wake at different times of night, thinking that it was breakfast time and trying to get out of bed. We made light of it, but on a number of occasions she would fall and I had to call an ambulance for help.
I was in the room next to my Mum with the door open so that I could hear if she needed me. I was just always alert, not sleeping deeply. I didn’t realise at the time how negatively this affects you. I had a lot of anxiety because of a combination of things and started to listen to guided meditations to try to get to sleep.
“I guess I just thought that I could do everything, and as it turns out, I couldn’t. I had reached crisis point.”
We were in touch with St Clare and a Hospice at Home night sitter came and stayed for one night with us and cared for Mum. It meant that for the first time in 3 months, I actually got to have a full night’s sleep.
A stay on the Inpatient Unit
Following this intervention from the Hospice at Home team, they could see that Mum’s symptoms had become worse and she required a stay on the Inpatient Unit.
In September 2015, Mum was admitted to the Hospice centre in Hastingwood where she could have symptom management and be helped to feel more comfortable.
“The quality of the ward, the equipment, and the 24-hour care were second to none.”
The team were amazing, and I think they really took a shine to Mum! I remember us having a lovely photograph taken with the team on the day she was leaving the Inpatient Unit.
“Thanks to the care she received, Mum was helped to be well enough to leave St Clare.”
The team helped to arrange the best place for Mum to be discharged to. It was no longer possible for me to care for Mum on my own at home, so the St Clare team helped to get her moved to a residential care home in nearby Great Dunmow. St Clare’s was amazing with that, doing a lot of the paperwork to achieve the best result.
Mum died two months later, on 9 December 2015. I am still so grateful for the last year that we had together, making special memories. I was able to help Mum to do some things she had always wanted to as, as well as simple things like taking time to listen to the birds sing and look at the flowers.
Rebuilding after Mum’s death
Physically and mentally, it was a huge strain being Mum’s main carer, and I’m still recovering from the whole experience. I had a series of completely debilitating autoimmune conditions caused by the stress, and my health still isn’t back to where it was before my Mum died. It had a huge impact on me.
“Looking back, I realise now I was probably trying to be superhuman. You don’t realise everything that is going to be ahead of you, and so you’re trying to do everything you can, but it’s not sustainable.”
The message I would like to get across to help others is, that even if you think you can do everything for your loved one, see what other support is out there. Make sure that what you are doing is manageable and sustainable. If you can, get help in place before it is too late and don’t underestimate the affect it can have on your mental and physical wellbeing.
“If you try and do everything, you get yourself in a pickle, and then you are no use to anybody!”
During Mum’s illness I was lucky to have the support of my Mum’s friends, Kath and Charlie, as well as my cousin Angela, who were a huge help. I’m super grateful for all the things, however small, which friends and family did for my Mum.
Another thing that I found really helped me through this time was a book called 365 days of Mindfulness. Mum and I would read the book together and practice each activity of the day. This was the start of a journey for me of how mindfulness can help calm the mind and help with anxiety.
Craig’s Trek challenge
Ever since I was with Mum in the Hospice, I have wanted to do some sort of challenge to fundraise for St Clare. Seven years after Mum’s death, I am finally, hopefully fit enough to take on the huge challenge I have planned.
In July and August 2022 I will be taking on a two-month fundraising trek for St Clare, walking the GR11 route through the Pyrenees mountain range from the east coast of Spain on the Mediterranean, all the way to the west coast on the Atlantic.
The route covers a total of 820km (522 miles) and one of the greatest challenges is the elevation change – ascending and descending a total of 128,000ft which is the equivalent of climbing up and down Mount Everest 6 times!
To sponsor Craig, visit his fundraising page here