Caregiver support for people with diabetes

Being a supportive caregiver, family member or friend to a person with diabetes can be both a gratifying and a challenging role. Diabetes affects the whole family, not just the one taking medicine. Here is Tani’s story: a supportive mother of a Type 1 child.

Could you tell us your daughter’s diagnosis story?

She had started complaining of tummy pain and this was around her time of the month, so we dealt with that as just that… her time of the month. She had also been getting tired quite a bit and was getting headaches, so we took her to an ophthalmologist since she wears prescription glasses, but nothing came of it. For a while everything seemed fine, except we noticed when we picked her up from school she was tired and would complain of having headaches and was really grumpy and moody.

Two weeks or so before she was diagnosed, I noticed that she was drinking more water than usual. She notoriously disliked drinking water, so I was actually thrilled. I noticed an increase in her appetite but because she never ate much before, I was happy. Both my husband and I thought she was growing up and therefore her body needed more food. She obviously started going to the loo more but as she had started drinking more water, I didn’t think too much of it. Then one night at about 11pm, we had to go to the hospital for something minor. They did the routine tests and also checked her blood sugar. It said “high” on the machine, and by around 3am the next morning, it was at 29mmol/l. (Normal blood sugar is between 5 and 9mmol/l.)

What do you wish you’d known when she was diagnosed?

So many things:

I wish I had known that insulin is not a drug. For a long while I was thinking that we had to ensure that her eating was right such that we did not have to give too much insulin. For some reason, I thought that the goal was to make her less reliant on it. For the first weeks I was like a crazy woman, going through my pantry, getting rid of high carbohydrate food and high sugar snacks, freaking out realising just how much sugar is in everything! It was only when I realised that insulin is something necessary that I started relaxing and handling things better.

I wish I had known about how important carb counting is, and how much it has given all of us a sense of control. (Here’s a simple guide to carb counting.)

And I wish I had known that everything was going to be okay. Yes, our lives changed, but this is now our new normal and although some days are tougher than others, the alternatives could have been so much worse.

What extra support do you think is needed for caregivers of those who are newly diagnosed?

I think caregivers need a support structure: they should be ‘introduced’ to other caregivers. Almost like a buddy to talk to – because as great as our doctors are, they don’t always have the time to deal with the emotional side of things. I know there is a lot of resources out there but for newly diagnosed caregivers, it is overwhelming, daunting and at times seemingly contradictory.

What coping mechanisms did you find most helpful?

Access to safe information. I say ‘safe’ as there is a lot of inaccurate information out there as well. Someone  recommended Sweet Life to me, and the information on the website was a godsend. Once I slowly started building up my knowledge base, I started calming down. I also had the support of a group of Type 1 diabetes parents – a WhatsApp group.

I spoke to a few parents who had similar stories and I realised two things: I am not alone and life goes on and we will get through this and get to our new normal.

What would you say to a caregiver who is struggling?

It’s going to be okay. As a caregiver you have two massively important tasks ahead of you:

1. The first is to teach your Type 1 child to be independent and not just to survive but to thrive.
2. To teach them to love themselves enough to want to look after themselves, manage their diabetes and be healthy.

To ensure that these two things happen, you need to gather and read as much information about diabetes as possible but also be aware of contradictory information.

Educate yourself so you can make the best decisions you can under the circumstances.

I know that diabetes is classified by some as a disability, but don’t treat it like one and don’t let your child treat it as one either. With the proper care and support, there is nothing a Type 1 warrior cannot do.

How would you like to help others?

I would like to be available for other caregivers, especially newly diagnosed ones, to be a buddy, someone they can ask questions, talk to or just cry. I realised how important it is for us to cry as it is a sign of acceptance. It took me a long time to cry, I was just too busy trying to figure things out.

What makes your life sweet?

My husband and daughter and our 3 dogs. We are in this together. My daughter is such a warrior: I am so incredibly proud of her strength and courage. Together we are defining our new normal and you know what, it is actually not that bad. We eat good, delicious and healthy food. When we want to have a treat we have it, it’s just not an everyday thing. Everyday we are learning but we are learning together.

If you would like to get in touch with Tani for caregiver support, email her here.

What to read next?

10 ways to offer diabetes support: Being a supportive partner can be both a gratifying and a challenging role – especially when living with a person with diabetes. Diabetes affects the whole family, not just the one taking medicine.

How to help during diabetes burnout: Diabetes burnout is unavoidable, when you’re living with diabetes. But how can you help during diabetes burnout? What can you offer someone you love who is struggling?

How to support a friend with diabetes: Some ideas for what to do when your friend has diabetes and you want to help.

Jametlene Reskp on Unsplash