We know that diabetes can be overwhelming at times – and not just for the person with the condition. As Carers Week 2013 approaches (10–16 June), Health Psychologist Dr Katharine Barnard and Consultant Clinical Psychologist Clare Shaban look into the different perspectives of caring and offer practical tips to cope
When Matt, 29, from Cheshire, was diagnosed with Type 1 three years ago, little did he realise the emotional impact it would have on his fiancée, Kelly, 28. “I was pretty much in denial after diagnosis. Once I felt better after getting treated at hospital, I tried to put it all behind me and move on,” says Matt. “I wasn’t really looking after myself and, while it was – of course – affecting my health, it was affecting Kelly’s, too.”
“I felt like Matt was pretending his condition didn’t matter and that he could carry on as normal,” says Kelly. “He plays rugby and likes to have a fair few drinks with his friends, and he just wasn’t taking his insulin properly and getting so drunk he forgot to look after himself.
So, I felt like it was down to me. I would constantly call him to check he’d tested his blood glucose, check over his diabetes kit to make sure he was injecting – I felt like I was a real nag. I developed anxiety attacks over it and wished I had someone to talk to – but I always felt that I didn’t have anything to complain about because I wasn’t the one with diabetes.”
After a few months it came to a head when Matt had a severe hypo and had to be hospitalised. When he recovered, Matt began to accept his diabetes and, while Kelly still watches out for him, she feels like she has been able to take a step back with the knowledge that he’s taking care of himself.
“I still worry, of course,” says Kelly. “Even just a few weeks ago Matt had food poisoning and was vomiting all day and night. I had to keep a close eye on him and keep testing his blood glucose levels.”
As anyone with the condition knows, Type 1 and Type 2 diabetes can be demanding and time-consuming – and not just for the person living with the condition. Loved ones and carers can become overwhelmed by their concerns for the person with the condition, and are often left worried and uncertain about the implications.
While diabetes healthcare teams are there to help the person diagnosed, it’s also important to recognise that loved ones – whether that’s a family member, a partner, a friend or a parent – also need a little help sometimes. It’s long been recognised that diabetes impacts not only on the individual, but also on the health and quality of life of other family members.
The role that carers/loved ones play in supporting the person with diabetes – both practically and emotionally – can be draining, especially if they don’t feel like there is anyone they can share their concerns with. What worries carers? Whether it’s Type 1 or Type 2, diagnosis can come as a great shock.
There’s a huge amount of information to absorb, as well as learning new skills and embracing the lifestyle changes that are often recommended. This often involves considerable adjustment for family members, as well. Carers and family have described feelings of guilt around diagnosis, questioning themselves about whether their actions might have caused the diabetes in any way: family history, antenatal care, lifestyle and dietary choice.
Brian, 66, from Essex, knows only too well. “I’ve always been the one bringing home sweet treats, cooking lavish dinners and encouraging Jean to open up another bottle of wine after dinner. So, I felt guilty when she was diagnosed with Type 2 last year.” Of course, Brian is aware that there are many different factors for developing Type 2 diabetes. “Obviously, Jean had to make changes to her diet – so I felt even more guilty when I wanted to eat something she was trying to avoid.
Now, I realise that it’s been a wake-up call for both of us and we are both trying to live a healthier lifestyle as a result – while still enjoying the odd treat now and again.” As life after diagnosis takes shape, carers can feel very responsible for overseeing day-to-day tasks. This can mean the carer takes inappropriate control and limits opportunities for the person with diabetes to learn to take responsibility. And this can be particularly true for parents.
Janine, 41, mum to Josh, 9, has been overseeing her son’s diabetes since he was diagnosed four years ago. “While Josh has had great care and support over the years, I didn’t feel comfortable with Josh going round to his friends’ houses or going on school trips.
Sometimes I made up different excuses as to why he couldn’t go somewhere – I was so worried he’d go hypo and no one would know what to do,” Janine explains. “I’ve started to realise that this isn’t good for Josh. I just need to make sure that anyone looking after him in my absence knows what to do.”
It’s common for parents of children with Type 1 to feel anxious, low and fearful of their child having hypoglycaemia (hypo – low blood glucose levels). However, fear of hypos isn’t just restricted to parents – partners and family members of adults with diabetes are also found to have anxiety and fear about hypos – both real or anticipated. Kelly agrees: “Having seen Matt have many hypos of varying degrees, I still have that anxiety about what to do. I know what to do, but it still scares me sometimes.”
Brian also finds the prospect of hypos daunting: “Jean takes certain medication that she’s been told can cause a hypo. It’s not happened yet, but it’s a niggle at the back of my mind. I feel like I am on guard about the possibility of her having one.” The importance of managing diabetes as well as possible for good long-term health is an accepted part of diabetes care.
Carers inevitably become concerned if they believe that the person is neglecting themselves or seem to be taking risks. This anxiety may translate into frustration and anger, or feelings of helplessness. See ‘Caring… and sharing’, page 35, for tips that can help.
Diabetes 24/7
Diabetes isn’t just about the impact on public health burden, but is also a very personal daily challenge for people with the condition. There’s no get-out clause when it comes to coping with this lifetime commitment, or even to take a few days off. The right adjustment and being able to put the diabetes into context with other life priorities is essential to avoid being overwhelmed and feeling controlled by it.
It can really help to develop plans for managing the inevitable worries associated with a long-term condition. This may mean learning to live with the worries in a way that they don’t impact on your activities, rather than putting a stop to them altogether. See ‘Supporting role’ above, for tips on how family and loved ones can make sure that they have a break or ease the impact of diabetes and the role of caring – if the case – on their lives.
More support for carers