Diabetes affects everyone differently, but it also affects the people close to it daily too.
Caring for your child with type 1 diabetes can have a positive and worthwhile impact on your life, but this doesn’t mean you don’t need support sometimes too.
A lot of people don’t see themselves as a carer of their child – they’re just doing their job as a parent or guardian. Many people think that they’re doing what anyone would for a person they love, but a carer is anyone who looks after someone who needs help day-to-day.
You shouldn’t feel guilty admitting that caring for a child with diabetes can put a lot of pressure on you, your relationships and your finances. Opening up about being a carer can help you can get the support and help you need, and also help other people in the same situation. Here's Sue doing just that.
Your reaction when your child is newly diagnosed
It can often come as a shock when your child is diagnosed with diabetes.
A lot of parents feel guilty when they find out their child has diabetes, but it isn’t your fault. Genetics play a small part in why a child might develop type 1, but there are a lot of other factors too that we’re not sure of yet. This means we’re still not completely sure why people get type 1. If you're new to diabetes, there is lots of practical information and support available for free on our Learning Zone. And you can order or download a copy of our guide to type 1 for parents for free to get more advice about caring for a child with type 1 and hear from other parents about their experiences.
Most people who look after a child with diabetes don’t know anything about it before diagnosis. But your healthcare team is there to help you. Don’t be afraid to ask them questions and ask for support, you need to understand what diabetes is and how to look after it too.
It’s okay to feel sad, angry and overwhelmed at the start because you might have to make a lot of lifestyle changes too.
If you’re coming to terms with a diagnosis of type 1 diabetes, it’s normal that this can take a long time. Don’t force yourself to stop dealing with the different emotions that it can cause, but let yourself work through these at your own pace. It might help to separate the physical act of looking after diabetes from your emotional acceptance of it.
"I don't like to burden people with what you have to do all the time."
- Sue, read Sue's story
Looking after yourself
When you’re caring for a child with diabetes, it can often feel like you have to take around the clock responsibility for them. But it’s important to look after yourself too, this can be restarting or starting a new hobby, seeing your friends or just getting enough sleep.
Get enough sleep
If you’re looking after a child with type 1, getting enough sleep can be hard. You might not be if you’re doing nightly blood sugar checks, or just up worrying about them.
But getting enough sleep is really important for your mental and physical health. If you can share night-time responsibility with your partner or someone else, try and come up with a way of alternating night-time responsibility.
If your child is having a lot of night-time highs and lows, make sure you speak to your child’s healthcare team about what you can do. They might suggest changing your child’s insulin dose.
See your friends
It’s important to still feel like an individual while you’re caring for your child. This can be difficult, especially if you’re having to make big lifestyle changes to manage diabetes.
If your friends have been a bit distant, this isn’t always because they don’t want to help you, it’s probably that they don’t know how. Remember that type 1 diabetes isn’t that common, so it’s likely that this is the first time they’ve been around it.
It can be hard to make the first move, but sometimes you have too. Let them know if you’re comfortable with them asking questions, explain what diabetes is, how it’s affected things at home, and how they can help you.
Find a community
Looking after someone with diabetes and helping manage it can leave you emotionally and physically exhausted. Finding people who are also looking after a child with diabetes can really help you cope. They’ll understand, and be able to offer you support when you need it the most.
Sharing your experiences and talking to people who know exactly what’s it’s like can be really useful for emotional support.
A good way of getting in touch with other parents or carers is through our local groups or on our online forum. We’ve got dedicated boards for parents that are some of our most active boards so you can chat and meet other parents.
We also run family weekenders, where you can meet other families who have type 1 diabetes. These weekends are made up of a number of sessions that can offer you support and help you create a new group of friends.
Looking after your other family relationships
When you’re looking after a child with diabetes, your relationships with other family members can sometimes be put on the backburner. Caring for a child with type 1 takes loads of energy. This can mean putting in effort with other people can sometimes be difficult, especially if you’re stressed, tired and busy.
If you have a partner
If you have a partner, don’t feel guilty about putting each other first sometimes. Try to find someone who can help you, like a babysitter or a grandparent who knows what your child needs. This means you can both go out and spend quality time together without worrying as much. But we know this is hard so even something small like bringing your partner a cup of tea can show you care.
It’s important to remember that you are different people and you will deal with situations differently, and that includes looking after your child. This could be that one of you might find accepting a diabetes diagnosis more difficult or learning carb counting is easier for one of you. It’s easy to get annoyed with each other if this happens, but try to remember you’re both under the same pressure and that this often affects your moods.
This is normal and being there to support each other will help you both, and your child in the long run.
If you have other children
Feeling like you’re missing out and feeling guilty about not spending enough time with your other children is common.
Having quality time with your other children is important so you can make sure they feel supported too.
If you have someone that can look after your child with diabetes, making some time for you and your other children is a really good way of making them feel important.
Do something together that you’ll both enjoy that can get you out of the house. This will help you focus on your other children so you can make sure they’re getting the support and time they need.
You might want to include your children without diabetes with different bits of your diabetes routine. This doesn’t mean they should take on any responsibility of their sibling, but helping with some day-to-day activities like cooking will help them feel involved. Doing something small like cooking together a couple of times a week can be a fun way to spend time together as a family. It also allows your other children to ask questions, learn more about diabetes.
It’s important to recognise that your child’s siblings might feel like that should take on some responsibility for looking after their brother or sister. If this is the case, make sure they don’t feel they have to and they have time with friends and other family members too.
Juggling your career and being a carer
Looking after a child with diabetes and working can sometimes feel like having a full-time job. Having a job is often really important to a lot of people because it gives you a separate identity, can add to your own self-esteem and means money worries are less likely.
If you’re struggling to keep a balance between your job and looking after your child, speak to your employer as soon as possible. They’ll be able to talk you through the different things they might be able to do to support you.
You legally have the right to request flexible working hours once in every 12 months or ask for emergency time off if you need it. If you’re formally requesting flexible working hours make sure you’re being clear that you’re making a statutory request.
Your employer can only deny a request if they have a good business reason to say no, but they have to offer you the ability to appeal this decision.
If you’re worried and need extra help financially, you might be able to get help from the government. Find out more about Disability Living Allowance and see if you qualify.
Letting go of managing your child’s care
Letting go as your child becomes more independent, or letting someone else manage their care, can be nerve-racking. But it's a really important step in teaching your child the skills they'll need to manage their diabetes as they become an adult.
If your child is starting school or moving to a new school, it's natural to be worried about the level of care they'll be getting. Schools have a duty of care to look after any child with a medical condition, and we've got loads of practical tools to help you make sure your child is getting the best care possible at school.
If they're going into adult care soon or moving out to go to university, we also have loads of information to help you and them as they grow in independence.
Ask for emotional support
Looking after someone is hard, and it affects everyone differently so make sure you ask for help if you need it. We have our helpline that’s dedicated to helping anyone affected by diabetes.
If you’re struggling caring for your child on your own, this doesn’t make you a bad parent. But we know a lot of people find asking for help tough.
If you’ve been feeling stressed or anxious for quite a long time, go and see your GP. They’ll be able to help you figure out what could help. That might mean seeing a trained medical professional or recommended medication that can help.
"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."
- Sue
