Are children young carers of diabetic parent?

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FJS

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Carer/Partner
Hi there

I’ve started to wonder if my children should be registered as Young carers? In 95% of cases, when my husband who is type 1 has needed support I have been there while my children watch on (or run away). Very occasionally I’m not there and they are left ‘in charge’. In most cases his hypo awareness kicks in and he can sort himself out but what does a parent do when they’re finishing up at work and a child calls in a panic because “Dad’s low and he’s not listening to me, how soon will you be back???”
In those moments I can’t help feeling the 12 year old is the ‘adult in charge’ and takes on the carer’s position. It’s a temporary position but occasionally presents itself. Is there support out there for 2 parent families or because he is not a single parent relying on his children to mind out after him, there is nothing?
Just wondering what others experiences are.
 
It’s worth seeing what there is for young carers in your area but it tends to be support groups or outings rather than helping them with them caring for a parent (or sibling).


As for supporting your kids to support their dad it’s good to not get panicky yourself. If his diabetes is generally well controlled and you are available on the phone at least then that means they have a grown up to back them up. If there are other grown ups they can all too that’s helpful. My 13 year old is diabetic and both my teens have various people in their phone who they can call if they can’t get hold of either of us and they need someone.

My older teen knows how to do the glucogon injection if needed but also that an ambulance would need to be called if that’s necessary anyway. It’s handy to use any expired glucogon to practice with (and good to check the one you have is in date ).
 
It sounds to me like your husband's diabetes is poorly managed if he is getting even occasional hypos which need assistance from a third party, be it you or your children. I would say that it is his responsibility to get better support to manage it so that he isn't putting this onto you and certainly not onto your children. In this day and age with modern technology, it shouldn't be happening, so please do not assume that this is normal for Type 1 diabetes.
It may be that he needs a change of insulin or a change of basal dose or a refresher course on carb counting or better tech. Does he have a sensor on his arm to monitor his levels and alert him when they are dropping too low. If he does, what level is his
low alarm set. If he doesn't have a sensor then he needs to get them on prescription. There is also the option of an insulin pump if he is just on injections and now there are sensors and pumps which talk to each other and can suspend his insulin if he is dropping low or correct with a bit more insulin if his levels are going too high. Lots of options to tackle this situation and the place to start would be to get a referral to his diabetes clinic if he is not currently under a consultant at the hospital. If he is already a patient at the clinic then he needs to tell them about these hypos and the strain it puts on his family and young children and ask for help. To me there is less shame in asking for help from the people who are paid to help him at the clinic than expecting help from his wife and young children who are clearly being traumatized by this situation.

Really, it doesn't have to be like this! 30 or 40 years ago, maybe, but there is so much better support now to help prevent these situations.

There was a lady on my DAFNE (Dose Adjustment For Normal Eating) course who had been diabetic for 50 years and her children had grown up with regular scenarios like your husbands with paramedics being called when her husband or children couldn't revive her and most of the problem was that she was using old fashioned insulin and ancient equipment that should have been in a museum and was badly worn after 40+ years of use and not dispensing accurate doses.. After doing the course, she was kitted up with an insulin pump and her problems with regular severe hypos have been solved.

I live on my own so I have to keep myself safe. Maybe part of the problem is that your husband has become used to you dealing with it for him and being there as his safety net and probably doesn't realize how much of a strain that puts on you and the children.... as well as on his own body! He needs to take steps to get help to sort out the problem with his diabetes management.
 
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My mum has been type 1 since before I was born, so I had it drummed into me since I was very small that if mummy was ever poorly I should give her sugar. I never had to do it though, the only times she needed assistance my dad was there. I was always aware that she needed to eat regularly and sometimes quickly, but she could always deal with it herself so I never took on the carer role really.
 
I was diagnosed over 2 years ago, and live alone. I've never needed assistance with a hypo, and these days thats normal.
I think if someone is regularly needing help, they need to look at getting better control, especially if is negatively impacting others.
 
I was diagnosed 20 years ago and not needed hypo assistance. I lived alone for the first 10 years and still frequently travel by myself.
I have hypo awareness and a CGM.
Sure, it is nice to know I have backup from my partner when I am home but I would never describe him as my carer. It's like I wouldn't describe myself as his carer when he cut his finger badly when slicing vegetables and needed to get to hospital

I understand that the impact may be greater on a child if they were alone with someone having a bad hypo but, if this is an everyday occurrence, the diabetes management needs adjusting.
 
I hope the OP doesn’t feel judged by some of the replies - they all contain useful information but when you’re reading a post it can be hard to get the tone and it’s easy to feel defensive.

Even someone with well managed diabetes can have times when it goes wrong and you get a hypo. Your kids being confident in when it’s serious and they need to intervene (and how to do that) and when it’s just a slight low that is easily rectified and they don’t need to worry can be tricky to convey. If a kid has heard that a hypo is dangerous then they might panic about a stable 3.9 hypo or even start to panic before then if the BG is dropping. Often a hypo isn’t dangerous but knowing when it is and how to act is important for anyone in the household. We included out older child in the diabetes education and we do a refresher of what to do with both kids every now and then for if there is a big hypo.

I hope you and your kids can feel confident and that there aren’t any more panicked phone calls for you to deal with.
 
Thank you for everyones replies. My husband has very good control and all the new modern tech-but a sudden crash in sugar can still catch us all out. As I said, 95% of the time when his level goes down all is well and managed by him. It’s harder if you’re away from home and there’s the embarrassment of a ‘making a scene’, and access to sugar is less straightforward. My oldest finds seeing big strong Dad have a wobbly moment unsettling despite my best efforts to remain calm myself-I think the potential severity of his condition is frightening for her.

Thank you to Thebearcametoo for understanding how some of the supportive but slightly misjudged posts may have been interpreted.
 
@FJS sorry to read about your husband’s recent BG crashes. It is true: despite the best tech and the best hypo awareness, it can still happen and, because it is not as common as, maybe, it once was, it appears more scary.
This is why ”access to sugar” is important at all times. I have Lift/GlucoTabs in every bag, room, coat pocket but I know bags are less common for guys - my partner would certainly struggle as he is always asking me to carry his phone/wallet/keys.
Would it help your husband if each member of your family carried hypo treatment when they are out with him? I wonder if it would make your eldest feel better if she had something on hand to help by knowing she can do some thing to help. i guess it is walking the narrow line between being able to help and, back to your original question, being a carer.

My other thought is, depending upon her age, it would help if she understood what is happening to her Dad. I thought this video shows how it feels quite well - better than a list of symptoms.
And it is relieving to know that recovery is usually quick and easy and very very very rarely fatal.
 
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Absolutely @FJS Until someone has had a ‘falling over a cliff’ hypo they don’t know how quickly they can come on. A friend had a bad hypo despite a Libre. It didn’t catch the sudden plummet in time. This hypo was not due to anything they did wrong.
 
I am sorry if my post came across as perhaps a bit judgmental, but we do hear of cases here on the forum, where a partner is put in this position of responsibility because the person they love does not look after their diabetes and manage it well. I am pleased to hear that these incidents are very rare occurrences with your husband. I think it was the way you phrased your post which made it seem like it was a much more frequent problem, particularly when you said.... "in 95% of cases when my husband has needed support, I have been there.....
FJS said:
In 95% of cases, when my husband who is type 1 has needed support I have been there while my children watch on (or run away). Very occasionally I’m not there and they are left ‘in charge’.
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Also, the simple fact that you feel you are leaving your children "in charge" and that they should perhaps be considered young carers makes it seem like it is a real concern to you, rather than a once in a blue moon occurrence which to me, requiring assistance with a major hypo would be unless there were other circumstances or conditions which meant the person needed more support. To me if people are having more than 2 or 3 incidents like this in a 10 year period, it is too many.! Maybe that is naive of me but I would hope not with the modern technology we have access to.
 
If I can chip in with a comment from the carer support point of view? The following is a definition of a carer taken from the website of a carers support charity I volunteer for.

"A carer is someone who provides unpaid care, for a few hours a day or round the clock, to a friend or relative who could not manage without their support. The care they give may be due to age, illness, disability, mental health problems, or substance misuse."

In simple terms, the child of a parent with T1 is unlikely to fit in with this definition if the parent can go about their daily life without always having someone to hand if needed. As such they are unlikely to qualify for any of the meagre young carers services that are available. It might be different for a child of a single parent where the parent either had co-morbidities or for some reason was not coping with their diabetes to the point where the child had to intervene on a regular basis.

That's not to say that your children should not be incorporated into your family back up plans to deal with an emergency and are taught from a very early age what to do, even if it is only to scream for help at the top of their voice if daddy is ill before they are old enough to understand.
 
I’d probably agree with the others, though I can see how their posts would come across a bit harsh.

Personally in 15+ years of diabetes I have needed help twice. And both times I wasn’t unable to treat myself it was just that I was panicking too much that I needed people to open things.

If these hypos that need help are happening often enough that they are causing yourself or your children to worry then it is worth your husband seeing if there is anything he can do to help improve things.

If it’s just been one recently that has made you all panic (I was shaken up for a good amount of time after mine so understand that) then I’d just go through the hypo treatment as a family.

Keep the designated hypo treatment in the same places. Choose something long life and keep it at home, in the car, in everyone’s coat pocket, bags etc. If possible consider using the same hypo treatment every time so that the hypo brain has more chance of understanding what’s going on, and make sure the children know give dad this, if it doesn’t work call these numbers (yours plus a backup - is there a neighbour nearby etc).
 
FJS said:
Hi there

I’ve started to wonder if my children should be registered as Young carers? In 95% of cases, when my husband who is type 1 has needed support I have been there while my children watch on (or run away). Very occasionally I’m not there and they are left ‘in charge’. In most cases his hypo awareness kicks in and he can sort himself out but what does a parent do when they’re finishing up at work and a child calls in a panic because “Dad’s low and he’s not listening to me, how soon will you be back???”
In those moments I can’t help feeling the 12 year old is the ‘adult in charge’ and takes on the carer’s position. It’s a temporary position but occasionally presents itself. Is there support out there for 2 parent families or because he is not a single parent relying on his children to mind out after him, there is nothing?
Just wondering what others experiences are.
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Hello, I can appreciate how disconcerting it can be for a child when a parent acts out of character. (All be it due to a low.)
I’ve had nearly five decades of T1 & can personally understand a man wants his privacy with a condition. Hypos for me can happen & can’t always be avoided. (In public, at work, at home.)
I have also dealt with other T1s on a low, finding the best course of action on offering treatment is to say very little placing the sweets in front of the hypoglycaemic then backing off.
Maybe your children could adopt a similar response to your husband’s lows when they spot them suggesting, “we brought you a present?” (As a suggestion.)

Best wishes.
 
Docb said:
"A carer is someone who provides unpaid care, for a few hours a day or round the clock, to a friend or relative who could not manage without their support. The care they give may be due to age, illness, disability, mental health problems, or substance misuse."
Just wondering what others experiences are.
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This resonates deeply with me FJS. I am in the midst of a family law case so the details will be a little vague but after two decades I got caught up with concerns about long term damage from being diabetic so over a three year period I misguidedly strived for low numbers - I got an hba1c of 37 and had a low alert set on my cgm of 4.3. Consequently I had too many hypos, severe, and on occasions my young child needed to call for assistance. They were upset but nobody suggested it as a welfare issue. In fact my child loves to understand what it's all about and can tell from my vocal tones if my levels are getting low.
My ex-partner is now using my type 1 to suggest that I shouldn't be around my child at all. It has been wretched, continues to be.
The quotation from Docb is absolutley on point, they're not carers but family members helping out, I have had to refute this claim myself and used this quotation.
I have turned things around and the key points as already referenced are:
  • always have something to hand - I carry dextrose always and/or jelly babies. Always.
  • at home have a sugary drink available, really it's only coke now. Even Ribena has virtually no sugar.
  • If using a cgm set the low alert at it's highest, the dexcom is 5.5. Finger prick a few times daily to calibrate the cgm because the numbers do get adrift.
  • be clear with your children that if they can see levels are dropping or think they are they should feel comfortable to talk to Dad and get him that drink if they want.
  • it's easy for Dad as a diabetic to get defensive because if levels are low that's how we get so he needs to try and be open to their help, or to them possibly getting it wrong.
  • reassure them and don't let them get hung up on it, be clear as to what to do and try not to elevate their concerns.
I learnt from this forum that if the right things are being done they're shouldn't be moments when assistance is needed, there might be wobbly moments but nothing to suggest that a carer is needed.

All givens offered respectfully.
 
bujanin said:
This resonates deeply with me FJS. I am in the midst of a family law case so the details will be a little vague but after two decades I got caught up with concerns about long term damage from being diabetic so over a three year period I misguidedly strived for low numbers - I got an hba1c of 37 and had a low alert set on my cgm of 4.3. Consequently I had too many hypos, severe, and on occasions my young child needed to call for assistance. They were upset but nobody suggested it as a welfare issue. In fact my child loves to understand what it's all about and can tell from my vocal tones if my levels are getting low.
My ex-partner is now using my type 1 to suggest that I shouldn't be around my child at all. It has been wretched, continues to be.
The quotation from Docb is absolutley on point, they're not carers but family members helping out, I have had to refute this claim myself and used this quotation.
I have turned things around and the key points as already referenced are:
  • always have something to hand - I carry dextrose always and/or jelly babies. Always.
  • at home have a sugary drink available, really it's only coke now. Even Ribena has virtually no sugar.
  • If using a cgm set the low alert at it's highest, the dexcom is 5.5. Finger prick a few times daily to calibrate the cgm because the numbers do get adrift.
  • be clear with your children that if they can see levels are dropping or think they are they should feel comfortable to talk to Dad and get him that drink if they want.
  • it's easy for Dad as a diabetic to get defensive because if levels are low that's how we get so he needs to try and be open to their help, or to them possibly getting it wrong.
  • reassure them and don't let them get hung up on it, be clear as to what to do and try not to elevate their concerns.
I learnt from this forum that if the right things are being done they're shouldn't be moments when assistance is needed, there might be wobbly moments but nothing to suggest that a carer is needed.

All givens offered respectfully.
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Bujanin -this sounds just like our situation! He is preoccupied with keeping his levels low. He’s been offered CBT with a specialist diabetic therapist. We do what we can and both children will confidently offer sugar when they see him dipping.
We just had an incident the other day where the ability to help was harder and my daughter called me in a panic. He had realised he’d dropped and walked to the car for lucosade. As he was low he was non-verbal and my daughter thought he was about to drive off in the car!
It was after an already stressful day, but it got me thinking how little support I feel I get as his partner (boy, it can feel lonely at times) and whether my children are ok. Diabetes is no secret in our household.
Thank you to everyone’s thoughts and supportive comments
 
FJS said:
We just had an incident the other day where the ability to help was harder and my daughter called me in a panic. He had realised he’d dropped and walked to the car for lucosade. As he was low he was non-verbal and my daughter thought he was about to drive off in the car!
Click to expand...

From my experience the cognitive can be affected. I know I’m low but “default mode” reaches for known location of treatments. (Work bag, coat pocket, a hoodie? Glove box.) especially if I wake from one.
I could have a pedestal with sweets & a neon sign saying “tuck in” right next to the bed. The focus is where I left my stash when I was straight.
 
I am really sorry to hear that you are under a lot of strain from your husband's diabetes management as well as the children finding it panicky at times. I am however pleased that you have come to the forum to discuss it. I am sorry if I didn't exactly respond in the most sympathetic way initially but clearly these lows and how your husband manages his diabetes are a cause for concern for all of you and he needs to acknowledge that and get more help. I hope CBT helps him. I think the great advantage of this forum is that we compare notes and can relate our own situation to how others deal with it. As a result we discover what is normal and acceptable and what is not. You and your husband may assume that the way things are at the moment is normal and that hypos like these happen regularly to others. I will confess that I sail close to the wind and have rather more hypos than I should myself but they are mostly very minor and I would be mortified if I needed assistance, not least because it would endanger my driving licence. I have hypo treatments with me everywhere I go and 1 or 2 JBs is almost always enough to deal with mine. If women can carry a bag then there is no reason why men can't carry a bag. You can get cross body bum bag type things which are gender neutral or small rucksacks which are both things I use. He should not need to walk to the car to get something or rely on his family to carry stuff for him. He also should have his low alarm set higher to give him more warning if he drops fast.

You say he has the latest tech but can you tell us what he actually has because I am thinking a hybrid closed loop system might help, where a pump and sensor talk to each other and the pump can suspend his insulin if he is going low or add more if his levels are going high. I think he would qualify for one if his consultant was aware of all the issues. The talk is that all Type 1s will qualify for such a system in 5years time but your husband's circumstances suggest he would benefit from and probably qualify for one now, so that would be something to ask about.

Once again it is not your husband's fault. Diabetes is very isolating and most people just muddle along as best they can and assume everyone must have the same issues, but the huge benefit of this forum is that we can all learn from each other and find out what is normal and what we can do to improve things and what tech is available to help with different issues, or which insulins might improve it. You have to be prepared to change and invest some time and effort in finding something that will work for you as an individual, but the rewards of good diabetes management and that means not having too many lows as well as not being too high, are well worthwhile.
 
Ok so this the support I need. This forum-so many lovely responses and many relatable experiences. I should come here more often. Thank you everyone and I wish you all well on your individual journeys x
 
FJS said:
Ok so this the support I need. This forum-so many lovely responses and many relatable experiences. I should come here more often. Thank you everyone and I wish you all well on your individual journeys x
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Here’s hoping your husband can make the family unit dynamics work for the team, regarding his condition.
He can have rewards dropping his personal guard on it. He sounds like he has a fantastic family.
 
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