Being the parent or carer of someone with diabetes, type 1 or type 2, can be overwhelming and worrying.
You might feel a considerable sense of responsibility. There’s a lot to think about and a wealth of information available, which may compound a sense of confusion.
Sourcing reliable and relevant information to enable you to support and encourage a proactive approach to self-care, in areas such as
- Diet and exercise
- Treatment types
- Associated complications
to name just a few, is really important to provide reassurance to all.
Speaking to people experiencing similar health issues can provide a tremendous amount of support and alleviate the feeling of isolation; increase knowledge and boost confidence.
There are many ways in which you can access support such as this:
- Join a support group such as our Diabetes Wellness Network or other voluntary group
- Attend a Diabetes Wellness Event where you will hear diabetes and related health talks; make new friends; share information and experiences in a supported environment
- Search the web for information from reputable sources such as NHS Choices or look for sites which provide health and social care information which is accredited through the NHS England Information Standard Scheme
- Share concerns and seek support from like-minded individuals through social media channels such as the DRWF diabetes forum on HealthUnlocked or look at our Twitter and Facebook pages, there are a significant number of people with diabetes, parents and carers and healthcare professionals who share their thoughts and seek the support of each other through the Diabetes Online Community, using the #DOC hashtag
Diabetes is never mild and a diagnosis can be a daunting prospect but with the right support and advice, it can be managed effectively.
Your Personal Experiences
Supporting Emma - Helen Bailey, mum to Emma
Emma was diagnosed with type 1 diabetes at the age of three. She had all the symptoms, going to the toilet, losing weight, drinking lots, eating constantly but always hungry, and was just miserable. What started off as a quick trip to the GP ended up with a short stay in hospital.
I have relied on the support of other mums of children with diabetes. There is an organisation called Children With Diabetes and their mailing list is very supportive. There is always someone online anytime day or night for when you just need a bit of reassurance.
Never underestimate the value of getting together with other mums and their children. I can still remember Emma’s face the first time she saw someone else using the same pen and blood glucose meter.
Getting involved with charities such as DRWF, JDRF and Diabetes UK has helped. We have found it is the only way to cope at times, knowing that we are helping raise awareness, money or just helping someone else makes us feel we have some control, plus the social side of meeting people in the same position is brilliant. We have attended events and been places which would never have happened if diabetes hadn’t come into our lives.
Attending education days organised by the hospital, charities or other support groups, not only to keep up to date with the latest research, but to share information and make friends.
There are a number of things that we couldn’t live without:
- A good team, so if you’re not receiving the care you would like be prepared to move (under Patient Choice you can do this)
- Try to get your school on board, not always possible but with their support your child can feel included and safe at school. Be prepared to go in and train and be on call for queries. It must be quite scary for the school especially when things go wrong as they can with diabetes.
- There are lots of social media groups you can join on Facebook and Twitter etc., but be selective and make sure they are supportive and well administered.
Other resources we found useful:
- Ragnar Hanas’ book: ‘Type 1 Diabetes In Children, Adolescents And Young Adults’ - although it is large, it is well written and understandable.
- A good set of scales.
- The Carbs And Cals book and/or the app for your phone/tablet is really useful
The power of social media - Kevin
My daughter Amy was diagnosed with type 1 diabetes almost three years ago, after just turning 10. When the word ‘diabetes’ came crashing into our life we presumed that out would go Amy’s carefree childhood. This was probably true initially until we started to cope with the daily tasks at which point we started becoming more proactive.
The first stage of diabetes advocacy for us came when I joined the Diabetes Online Community (#DOC) on Twitter and connected with other parents of children with diabetes.
After that we started attending events organised by DRWF, JDRF and Diabetes UK. Which led to meeting more and more people and connecting with those with whom we shared a common ground, I’ve been to many of these events and honestly I learn so much at each one.
Meeting others is just so brilliant. The joy Amy gets from mixing with other kids who go through the same things she does is excellent; she’s no longer isolated; she feels normal. Don’t get me wrong, relatives and friends are wonderful, understanding and supportive where they can be but they just don’t get it; they just don’t understand the struggles we have; the time things take to do…only recently have we managed to start eating dinner before it’s gone half-cold due to the enforced delays from carb counting, etc.
The biggest resource for me is my use of social media. I can’t bear to think that another parent will feel as isolated as we did. In the early days of Amy getting her insulin pump we encountered a few issues and by using social media I managed to get answers to my questions. Those issues occurred outside of the support times offered by the hospital so I'd encourage any parent (or person living with diabetes) to join in with the many diabetes groups so that they have got support.
Kevin tweets as @OceanTragic