Quitting job to care for T1D child?

[WhiskAverse]

Hi, has anyone left or paused work due to caring for a T1D child? My DS is 4yo and I'm struggling.

I've worked PT (2 days per week) for the last 3 years but am finding it too much managing things at the moment. We're 4 months into diagnosis so I'm sure things will get easier but for now it doesn't feel sustainable. We are in a financial position to do so, so that side of things isn't a concern; I'm more concerned about stepping away from the workforce altogther and it taking a toll on my mental health, ie not having anything 'for me' away from looking after my (adored) DC (they are 4 & 2).

T1 is so intense and sometimes I think it's good to keep my 2 days a week at work for balance, however some days it feels like it just doesn't work - eg I had to pop in to nursery treat a mild hypo at lunchtime as the staff are still learning. DH and I take it in turns to manage T1 stuff on my 2 working days so he's v involved.

Any opinions v much appreciated

Gosh it’s so hard to say. Having an older child with T1 it’s not necessary for me not to work as things stand now but I can absolutely imagine how it could end up that way with a younger child.

I’d also be worried about managing to secure a job in the future if you take an extended break.

I do remember having young kids though and that awful feeling when one of them was ill of having to call in and say I couldn’t make it so when you have a T1 and it’s likely to happen more often I can totally see why this feels like a good idea. Presumably you’d get carers allowance too. I know you said you can manage financially but every little helps!

I did. My son was 11. Childminder worked out carbs on for cooked pasta based on uncooked pasta and he had massive hypo. All ok in the end but made me realise how hard it actually is to manage it day in day out and not something it was really fair to get other people to do. I went from FT to school hours but that was pre covid. With WFH it might be different now.

Pre T1D id worked FT with 3 kids with only mat leaves off.

I did. My son was diagnosed at 7 he also has autism so it made things a lot harder as he’s very rigid. I was getting phone calls from school non stop.
I work PT from home now. I don’t regret it at all.

Oh tricky. 2 days a week jobs are like gold dust so I’d be reluctant to give it up. On the other hand you may find childcare gets more tricky once he starts school as you will presumably have the holidays to cover and you may not feel comfortable using holiday clubs.

Do you wfh?

At some point will he be able to use a pump? I know a child with T1 and a pump was quite liberating for him (and his mum!)

My child doesn't have T1D but a different condition which required a major surgery with a long recovery last winter. I haven't worked all year. It's not an easy decision but I don't regret it at all. It's felt like someone in our family has needed to be available most of the time and it made sense for it to be me.

Yes that’s part of my reluctance as well as the two days is so handy and work have been really supportive over the years.

He’s on a pump now which is a game changer! However it still requires constant management and decision making.

Sorry missed your Q about WFH. I wfh one day and in London the other day. But work are very flexible and understanding if I can’t get into London every single week.

Absolutely do not give up.

My DS had a massive hypo on his first day back to nursery due to chef using carbs for dried rice instead of cooked rice 😣
You’re so right, and however good / willing others are at managing it, it’s not their child…

I have TI as does my teen DD. Firstly, ensure your son has the best tech available - CGM system- . I have CGM and was horrified to hear a professional dismiss my request that my teen has it immediately. He genuinely told me that we need to wait a couple of years and then see. Over my dead body! He had the kit within the week. My mother, who has T2 *old people, body wearing out diabetes’ was told the sensors were ‘ very expensive’ - Mum decided she didn’t want to burden the NHS with expensive treatment. The sensors are £25 per week for immediate up-to-the minute blood sugar readings.CGM will make his life and yours easier now and in the future as he becomes more independent. You are able to monitor blood stats remotely which could make you feel more confident, and less anxious.

Secondly, if you can, I suggest a private consultation with an experienced diabetic expert ( ie one working/ leading a team in a NHS dept) as a one off to see what’s available for your son. This is just to be as informed as possible regarding T1 in children, and the treatments available.

Finally, I do understand the enormous responsibility you feel as a parent to a small child with TI, but things will get easier for you and for him. He will absorb your distress as you deal with high and low blood sugar, so it is important that you recognise your emotions around TI. IME not enough attention is given to the emotional toll TI has on diabetics and their carers- counselling might be valuable, and should be, but isn’t, considered by professionals. Sadly you may have to pay for this,

Do what you can to empower your child, get them to describe the symptoms of high and low blood sugar. Be very matter of fact about the numbers and what he needs to do. Make sure he uses a sensor and understands what the numbers mean and what he needs at that point. Of course, you can’t leave it to him to treat hypos yet, but you can get him to recognise the symptoms and identify the correct course of action. This will allow him to be an advocate for himself in the face of widespread ignorance about TI. I’ve work with some great teachers, but I have also had teachers refuse to allow my child to treat a hypo until they finished the test/lesson/detention. Child told one teacher blood sugar was low and was accused of lying

Tough times ahead for you both, but the great news, my diabetic team tells me, the current and developing tech means outcomes for diabetics are soooo much better then they were.

Thank you 🙏 Love to know your thoughts why?

Will your child be starting school in September?

He will. He’s on a HCL pump now and the school has two T1 students and a T1 teacher already so they have experience

This must be really difficult for you. Is there anyway you can do your hours over 3 days to give you some more wiggle room? I would be reluctant to give up work if you have an accommodating employer.

For many reasons but your next post being one of them

This is going to be lifelong and you cannot pit your life, skills, pension, sanity on hold over this. It has to be managed and got used to. He has been dealt a crap hand but sadly there is no getting round it.

Then I think you should at least see how he gets on there.
It is reasonable to expect his nursery and his school to manage this. I say that as a parent and as a teacher.
Four months will feel overwhelming, and every new situation will feel scary. But other people will need to support in order for him to experience everything he can. My husband has taken diabetic children (not ours!) off on scout camps and managed things through the night with them.

That’s shocking! Waiting two years to get a CGM would be madness! Thankfully we got one straight away due to his age and we got onto the pump after three months and it’s made a whole world of difference both in terms of management and emotional / mental burden.

We do speak to a diabetes educator based in the States once a month, not sure if you’ve read Think Like a Pancreas but it’s the author we chat to about BG patterns, exercise etc. But your suggestion is interesting in terms of seeing if any other treatment is available.

We have access to a psychologist through the NHS for DS but also for us as parents. I’m not doing well mentally and am also speaking to a private therapist.

I really appreciate all of your advice and especially regarding making management matter of fact / getting him to notice and describe symptoms. Don’t know if due to his age but he doesn’t seem to feel highs or lows which is tricky. But he has a good grasp of the main points of how to care for himself / what’s going on (as much as a 4yo can). Lack of awareness from general public is sooo tough.

and re outcomes. - that’s so so fantastic. All best to you and DD x

Interested to hear more about your talks with the think like a pancreas man OP.

Something really useful he suggested was raising the low alarm to 5mmol and treating with 3ish carbs (not the 15 carbs that NHS suggest) to prevent hypos (and subsequent rebounds by not over treating). It works well for us. He did a great pod recently with Justin from Diabetech on hypoglycaemia.

Also to subtract fibre from carb counts but you prob know already!

Actually spreading your hours over 3 days is a really good idea from pp if your employer would be ok with that. Works better for school hours and also means it’s less of an issue if you have an hour’s interruption.

You’d be crazy to give up a flexible 2 days a week job with 1 day wfh. Your child is still young but school sound amazing and like they will manage it well. He will
also grow and be able to manage it more himself. I’d stick at it

Do you mean treat at 5?

Do you listen to the Juicebox Podcast? It’s great also.

I work in a school and we have 2 x T1D kids and l can promise you l look after those kids as if they are my own - better in fact!! I've learnt a lot about it and am confident n looking after them. I would keep your job, your DS will eventually learn to manage it himself and it will jist become part of his every day life. It's tough bit you need to do something for you too op. Take care xx

The issue there is that I have 2yo DD and nursery is completely full so can’t put her in a third day…

Yes treat at 5. Yes Juicebox is great 👍