Should I give up work?

[FinnsMummy01]

Hello,

I apologise if this question / topic has been discussed before but I could really do with some advice please.

My son - Finn, was diagnosed with type 1 on the 1st December last year. He became unconscious at home & we were rushed into hospital. We thought he had a bad chest infection / bronchiolitis, he was in fact in DKA and he had a chest infection. Is he only 23 months old so as you can imagine we were totally shell shocked when this happened. In fact I am still coming to terms with it all. He is on the ypsomed insulin pump but everyday we are having hypos & hypers. We have been through everything with the diabetes team & consultant & they think a lot of it is down to the fact that he is so young / little. I am also still breast feeding Finn as somedays he refuses to eat.

At home there is myself, husband & our three older sons.

Finn was in hospital in May & June because he got sickness & diarrhoea from his older brothers. So his blood sugars & ketones were everywhere!

There is only myself & my husband who can care for our children. We have no one else who can help us. Before Finn was poorly my husband worked full time & I was working 10 hours on my husband’s days off work. I have been signed off work for the last six months as my mental health is a complete mess! My work place is starting to ask when I am returning work. With Finn’s health I cannot predict how he is going to be from one day to the next.

Has anyone actually handed in their notice & become fully time carers for their children? Is it possible financially?

I am just so conflicated in knowing what to do for the best. I just dont feel like I can leave him. I feel very apprehensive, constantly checking his blood sugars. I do not think I could concentrate fully on my job.

I am sorry this is so long!! Thank you for reading & I appreciate if anyone can help or advise me.

 

[Inka]

Welcome @FinnsMummy01 🙂 I have 3 children and one has a serious medical condition (not diabetes). I gave up work to look after my children until they were older and I don’t regret it for one minute. Your son is still very young. Obviously it’s not a decision anyone else can make for you, but all I can say is that my children come first. We had less money, but everything was less stressful and I was less frazzled, found it easier to cope, and was therefore a better mum.

 

[PhoebeC]

It may not feel like it now but it will get better. Keep your chin up, this is a moment and it will pass.

Looking at the overall siltation when levels are up and down and there's illness too is overwhelming, it is understandable that you feel this way. This is only temporary and he will be okay and life will get easier. Is there a small goal or certain pattern you can try and contact to help his levels stablished.

Will his team not offer anymore support to get his levels more under control?

I do not think it is the case that he should just have hypos and hypers everyday. He won't feel well like this so no wonder he doesn't want to eat. If I am hyper for any amount of time I feel so sick, and I know why and can make myself eat or at least get some energy into me.

He does need carbs though even being so little.

I am not a parent of a T1 child but others who are I am sure will be along soon to give advice. Only you and your husband know if you can afford to give up work. I am not sure what you do but with only 10 hours it might be money you can do without for now.

Take care of youself too. Sending you all love.

 

[Inka]

As your son gets older, he’ll be able to understand and contribute to his care a little. He’ll also be able to better communicate his feelings. Once he starts school, he’ll have support in school, but even then you might want to hold off going back to work for a year or two. There’s a big difference between a 5yr old and a 7yr old, for example. Managing Type 1 in a very young child is hard. Don’t beat yourself up about it. It does gradually get easier though, as you learn more and as they grow. I know two children diagnosed at a similar age to your son and things are definitely easier for them now than shortly after diagnosis.

Depending on your circumstances and income, you might be entitled to some benefits. I presume you already have DLA for your son?

 

[Sally71]

You have to do what’s right for your family. My daughter was diagnosed aged 6; at the time I was working as a midday supervisor at her school, which was meant to be just a filler until she became a bit more independent and then the plan was that I would eventually go back to work full time. If it was just the diabetes, I probably would have done that. Unfortunately she has had several other health issues, there was a time when we couldn’t go a week without her having at least one medical appointment of some sort. My husband works full time so he carried on doing that, and I’m still being a midday supervisor. She’s 19 now and hoping to go to university in September, and her medical situation has calmed down quite a lot from what it was, so I might finally be able to start looking for a different job. I’m lucky in that my hubby is well paid and we can live quite happily on his salary alone. Talk to your husband, work out if you could live without your pay, and take it from there. Hopefully it will only be temporary and once your child gets a bit older, and you get more used to life with diabetes, things will settle.

 

[Thebearcametoo]

My kid was 8 when diagnosed but my husband worked away a lot and because of ASD in my older kid we were already home educating so I was home. I had been doing voluntary work but that went by the wayside.

We found the first year after diagnosis difficult in part because of how our elder son reacted as much as the diabetes management.

I promise you it does get easier. It’s hard with young kids as they don’t always eat their whole meals so carb counting can be difficult. We tended to give m&ms or some juice to make up carbs if needed. Hypers when the is some insulin management are less dangerous in the short term than hypos so we tended to aim for around 10 when my kid went through phases of hypos. Has the hot weather increased them too? My kid runs high in hot weather but a lot of people go low.

Whether you work or not is a family decision. If you can get a free nursery place then that can help. I know it’s hard to let go and let someone else manage his diabetes but your team will have a schools/nursery team who help with diabetes education.

As for your work - are you taking parental leave or just general unpaid leave? Do talk to a union if you’re in one before giving up work. Just because work is asking about your plans doesn’t mean you have to have a plan.

And yes you should be getting DLA at at least the middle rate although with a toddler I would expect that to be higher rate and if you’re not earning you may be eligible for carers allowance.

 

[Lucyr]

Before Finn was poorly my husband worked full time & I was working 10 hours on my husband’s days off work.

I think it’s your decision, no one here can tell you what works for your family. It does sound like your previous working hours meant that either you or your husband were always off work for Finn though? So if you wanted to try going back to see how it feels and help you make the decision you could ask the GP for a phased return fit note and do less hours and see how it goes? Whilst you obviously want to be there for your son, sometimes having a bit of time away from that and focused on work, knowing your husband is available for Finn, can help with your own mental health.

 

[FinnsMummy01]

Thank you to everyone for your support, advice & time. I know it is up to me to decide what to do about work, I’m just finding it so hard to make a decision.