Sue's story: the emotional impact from caring for a child with diabetes

• Sue's son Oliver has type 1 diabetes
• As a carer and a nurse, she sought support for more mental and emotional support
• Sue regularly fundraises for Diabetes UK

I don't like to burden people with what you have to do all the time.

You just become this boring person that's just whinging and moaning about the fact you're so tired. I just do it you, I just get on. It is just relentless and a constant worry about the consequences.

Oliver has had difficulty in dealing with his own emotions when it comes to diabetes. He got his diabetes bag and he threw it and just said 'I don't want it anymore, I can't do it, I don't want this life I don't want to live like this anymore'. I held him and just told him that he's going to be okay, that he can handle it and he can do it.

The hard bit is that you've got to let them go. As a mum of a teenage child, the most powerful thing that I can do is to empower Oliver to go and live an independent, happy, fulfilled life. When they've got diabetes, it's very scary thinking about actually what could happen.

Support for mental and emotional health

Your emotional tank runs out very easily when you're giving care constantly. I was recognising that I was feeling carer's fatigue so I see a clinical psychologist once a month.

This was a private arrangement. This was me asking people I work with, because I'm a specialist nurse. 

Seeing a psychologist to help me to skill up on the mental health side of things, to help my patients and also help me, and help Oliver. And because I'm a nurse, there's almost that kind of feeling of expectations that you can handle health problems but it's very different when you're kind of living with them. 

And as part of my emotional well-being I also try to get out walking, running, exercising at least two to three times a week and that helps me to keep a healthy body as well as a healthy mind. It's just a bit of escapism.

What I would like to see for the future would be an increase in the amount of psychological well-being support and actually recognition that looking after mental health is equally as important as the physical health needs. And more investment in those services to help support people and families like us. You know if you look after your emotional health and your mind then you can have a full fulfilling and happy life with a medical condition.

Did you know that 7 out of 10 people have felt overwhelmed by the demands of living with diabetes? But most people can't get the emotional and mental health support they need.

This has to change. If you agree, start by signing our petition.

Since the coronavirus pandemic I've been continuing to work full time, on the front line, delivering face to face care as a community respiratory specialist nurse, supporting patients who live with chronic respiratory conditions in their own home and supporting them out of hospital. PPE has become a norm and it's a whole new level of challenge donning and doffing PPE as per current guidance on a door step! I feel grateful to work with an amazing team who have been each others rock through really difficult times. 

In order to keep myself physically and emotionally well during the pandemic, I have converted my garage into a mini gym studio complete with carpet and disco lights! Here I can still do my body combat classes which help me to shake off the emotional labour of NHS working, and full-time caring. I have also cranked up 111 miles walking or cycling through April, baked, tried new recipes and kept In touch with friends and families via Zoom.

Ollie's self-care

Alongside this I have my son Oliver who at 16 and living with type 1 diabetes has, earlier than anticipated, suddenly and unexpectedly faced the realisation of no GCSE exams, no prom, not seeing friends and needing to self care while mum is at work on the front line.

As Ollie has a health and wellbeing plan in school and I'm a key worker, he did fall into the category of young people who can be schooled. We discussed this as a family and decided to use this time as an opportunity for developing those all important independent self-care skills!

Oliver really is proving himself capable. He has been downloading his diabetes pump data, I email his wonderfully supportive PDSN (Sean) and now he is 16 we have agreed Sean can call and email Ollie directly rather than via a parent. This has felt a really great positive move forward! Sean called him last week and discussed some areas he needs to work on, such as remembering the confirm button on the 640g pump! And testing after hypos rather than relying on his continuous glucose monitor (CGM). He also talked to him about driving and the regulations around hypo management.

Part of helping us all feel Oliver is safer is having CGM. It has made such a difference to Oliver's and my quality of life. We both sleep more soundly and Oliver's hypos have reduced considerably. He still does not, however, wake up to the hypo alarms at night and this requires me to have supersonic hearing and an intuition to wake up, even when deeply sleeping. CGMs do make diabetes management more complex in ways, and they are not without their downsides, however overall we all feel safer and happier. Ollie's HbA1c has not gone above 7.4, it's now going down further and he's had no diabetes-related hospital admissions.

Oliver is going out for walks daily, enjoying the Xbox, is isolating other than the odd supermarket visit, earning money by doing jobs around the house, creating videos on a very topical theme - feeling trapped - to help his brother with his digital performance assessment. He is contacting friends via social media and has an interview tomorrow for college!