Partner of T1 - Help!?

[Cherry63]

Hi everyone been married to my partner for 12 years, hes been T1 for over 40 years now. Hes struggling with all sorts of health issues as a result of the diabetes, kidneys, cholesterol, bladder issues,eyes usual stuff. But the last 3 years hes had a few serious hypos in the night, which has needed an ambulance & sometimes hospital(if not able to stabilise at home). I'm struggling to cope with the stress of them, it's so severe eg, fitting, going blue. It's always in the night.I wake up and I realise hes going hypo, sweating & twitching etc. Sometimes I catch him and the glucogel does the job, followed by food. He had one this week a couple of days ago, whilst abroad on holiday. In my opinion it was preventable. He seems blaze and complacent with his illness. I feel absolutely traumatised by what happened but hes just carrying on and looks fine now. Is there a support group for partners of T1's. My friends dont really get it. Thanks

 

[trophywench]

Friends won't cos they aren't having to live with it Cherry and there's an end to it really.

Have you had this conversation with him - has he got the slightest clue how much he's affecting you?

 

[Cherry63]

I know they dont, one has seen him having a severe hypo about 2 years ago now, so sort of gets it. Up until that point he always tried to minimise ie....not had one for ages etc. After his friends seeing it he couldn't do that. Tbh, I almost left him, as it was preventable, as I found out later. Hed been out drinking with a load of friends & not eaten enough.
This time, he'd done quite a bit of exercise in the day and just not eaten enough again. I asked him at bedtime to have something to eat but he said he'd tested and he was fine. He'd been eating liquorice watching the football on tv. I've tried all sorts of tactics with him, I tell him straight what's happens each time and how it has me on pins all the time, esp after a severe hypo. I know I will calm down in time, I just dont know if I can take it anymore. I and i feel a bad person/wife for feeling this way. I do love him but I'm starting to resent him and that's not good.

 

[Kaylz]

Does he use a Libre or another form of CGM? Is he on a pump or MDI?

You keep talking about how you think they have been preventable but you have to think of it from his point of view, he maybe thinks he has taken enough carbs on board to keep him safe without swinging too high and it just isn't, hypo's can happen for no reason and have no rhythm at times, has he basal tested to make sure his dose is right? Not every hypo is going to be preventable and while I see how you may be feeling you have no idea how he might be feeling as men certainly aren't the best at talking about that kind of stuff

 

[Docb]

Hi Cherry. I don't know if it has occurred to you but you have another role in your life, that of carer. I raise this because getting yourself registered into the carers system might find you some of the support you need. It might also jolt your other half into getting his act together. Just a thought.

 

[everydayupsanddowns]

Hello @Cherry63

Welcome to the forum, and so sorry for the situation you find yourself in. Hopefully by keeping the likes of communication open, and with a bit of support (for both of you) you will be able to successfully resolve this. I have some sympathy with your situation, because I am ashamed to say that I put my late wife through several years of recurrent severe hypos overnight for years. Though the first time I needed to go to hospital really made me have a rethink about how I was dealing with my diabetes - and was part of the reason I joined here.

Up until that point he always tried to minimise ie....not had one for ages etc.

This is painfully familiar, but there I don’t think he is just being difficult, it is also that the brain, including the memory function, is significantly affected by severe hypos. It is likely that he will have little, if any, memory of the event itself - almost dreamlike. He might have a sense of it having happened by your reaction and memories of coming around, but not of the distressing nature of the event itself. I usually underplayed both the frequency and severity of my severe overnight lows. Research also shows that repeated severe lows effect the ‘aversion’ response that the event usually creates. People begin to normalise them, and no longer see them as being as significant and important to avoid as they actually are.

After his friends seeing it he couldn't do that. Tbh, I almost left him, as it was preventable, as I found out later. Hed been out drinking with a load of friends & not eaten enough.

I am beginning to wonder about the level of support and information that your bloke has been given over the years. Alcohol is a tricky beast to manage alongside insulin and T1 - especially if you’ve had more than just a couple. Initially there can be a big BG spike if drinking beer or cider, but then the alcohol prevents the liver from trickling out glucose as it usually does so BG can crash, especially overnight when the body usually reduces cortisol/glucose output at around 3am. Plus you are less clear thinking, so less likely to spot BG dropping. If I’ve had more than a couple of pints I usually find it important to set an overnight alarm so that I do a quick BG check for safety. Especially as I’m now sleeping on my own.

This time, he'd done quite a bit of exercise in the day and just not eaten enough again. I asked him at bedtime to have something to eat but he said he'd tested and he was fine. He'd been eating liquorice watching the football on tv. I've tried all sorts of tactics with him, I tell him straight what's happens each time and how it has me on pins all the time, esp after a severe hypo. I know I will calm down in time, I just dont know if I can take it anymore. I and i feel a bad person/wife for feeling this way. I do love him but I'm starting to resent him and that's not good.

Yup. You were right, exercise (especially in the evening) is another fairly high risk event. The effect of exercise can continue for 12-24hours after the activity, and reduction in insulin or top-up carbs are a good idea.

Has your husband ever been to anything to learn about the new, more flexible and precise ways of managing diabetes around food, carbs, exercise, alcohol and illness? Things like DAFNE have a great reputation for reducing hypos and improving quality of life.

Finally I would just offer this glimmer of hope. At one stage about 10 years ago I would have been having probably a dozen, maybe more, occasions in the year when Jane would have to ‘bring me round’ in the morning. At the time I would have estimated it as ‘about once every 6 months’ (that’s how far off my appreciation was) but I’ve not had any AT ALL for the past 7 or 8 years. All it took was me finally understanding that I wasn’t quite as good as managing my diabetes as I was telling myself, and that my ‘good’ HbA1c wasn’t everything.

Jane wrote this on our family blog at the time:
https://www.everydayupsanddowns.co.uk/2011/02/at-risk-of-sounding-like-grandma-walton.html

 

[Toucan]

Hello Cherry, welcome from me as well.
As you can see from the replies, you have come to a good place to find knowledge and support.
It is a very difficult situation to not only have to cope with your husband's illness, and still try an keep your relationship together.
I think Docb's advice about registering as a carer could be a route through.
I did this when I was caring for my mother, and through that found a local carers support group that helped me a lot.
As I have just said to another member though,try to find some time to relax and rest yourself, so that you have the strength and reserves to help your husband,
I've heard it called 'air hostess syndrome', - Always put your own mask on first, or you won't be able to help others.

 

[Cherry63]

Does he use a Libre or another form of CGM? Is he on a pump or MDI?

You keep talking about how you think they have been preventable but you have to think of it from his point of view, he maybe thinks he has taken enough carbs on board to keep him safe without swinging too high and it just isn't, hypo's can happen for no reason and have no rhythm at times, has he basal tested to make sure his dose is right? Not every hypo is going to be preventable and while I see how you may be feeling you have no idea how he might be feeling as men certainly aren't the best at talking about that kind of stuff

Hello Cherry, welcome from me as well.
As you can see from the replies, you have come to a good place to find knowledge and support.
It is a very difficult situation to not only have to cope with your husband's illness, and still try an keep your relationship together.
I think Docb's advice about registering as a carer could be a route through.
I did this when I was caring for my mother, and through that found a local carers support group that helped me a lot.
As I have just said to another member though,try to find some time to relax and rest yourself, so that you have the strength and reserves to help your husband,
I've heard it called 'air hostess syndrome', - Always put your own mask on first, or you won't be able to help others.

Hes recently changed to a libre sensor in the last few months, and he loves it. It's so easy he has back up blood testing kit too. Problem is he doesnt think his day through in the eve, what hes eaten, done etc. I'm on a diet at the mo, after xmas and he eats my meals which is very supportive but I've told him he cant eat like me and needs extras. I've said thus over & over. But he ate liquorice while watching tv before bed, which would give a false high reading. I even said at bedtime I dont think you've eaten enough etc but he didnt take me on. It's the carelessness I can cope with! I know sometimes hypos happen and you dont know why but sometimes it's very obvious! I'm not diabetic but I knew he'd done a lot of walking that day and hadn't had a big enough tea. He manages his own insulin pens & doses. I know he feels bad but I honestly feel hes being blaze about it. These really bad hypos never happen when hes alone & he has been a lot before we got married. He has no idea what's happened, as hes out of it...he cant understand why I feel so anxious for days/ weeks afterwards.

 

[Thebearcametoo]

It’s not about not eating enough. It’s about matching his insulin to his food. Is he carb counting and adjusting his insulin accordingly?


Please have a chat with your GP/nurse practitioner about what support there is available for you. Seeing someone be ill enough to require an ambulance one multiple occasions is scary and can cause you to then be hyper aware even in times when there isn’t the necessity (I’m not saying you over react or anything like that just that you will be in a state of hyper vigilance and that takes a toll on your health and mental well-being).

One of the hard part of being a carer is allowing the person you’re caring for to maintain their autonomy. It sounds like he could use a little refresh on how best to manage his diabetes and it may help for you to take one of the online courses so that you have a full understanding of diabetes. When you enter a relationship with someone who already has a chronic condition you miss out on the diagnosis and education stage (and lots has changed since he was diagnosed).

I would encourage you to get some counselling as a couple too. Your concerns for him are valid and need acknowledgment. His relationship with his diabetes is his and he may not think about how it affects you and being able to discuss that between you may end up falling into a pattern of him feeling like he’s being nagged or you’re being dramatic and you feeling like he’s being needlessly reckless. It may be that with a third party being able to help you listen to each other that you can find a way through. You may find that he’s depressed or being deliberately reckless or you may find he’s really unaware of how his management of his diabetes is causing both of you issues.

Don’t try to do it all alone. Lean on your support networks including us. And I hope his night time hypos are less severe. The

 

[Kaylz]

@Cherry63 if he's on a basal/bolus regime then there isn't any reason he should need any extra to eat, he just needs to match the insulin to the carbs, there are a few Type 1's that have adopted quite a low carbohydrate lifestyle since being diagnosed, if extra exercise its easy worked around by reducing bolus doses etc, I'm not quite sure what you mean by eating the liquorice would've produced a false high reading

 

[Cherry63]

It’s not about not eating enough. It’s about matching his insulin to his food. Is he carb counting and adjusting his insulin accordingly?

Thankyou, I understand everything you've said here and yes I think I am hyper vigilant sometimes and do nag. I'm terrified I'm going to get it wrong one day. There seems to be no support ou there for partners! Friends and family dont fully understand.

Hes had it for so long, he doesnt do any research on the latest thinking etc in managing diabetes. I could do it but I think he should be taking some responsibility for his condition too.

I think counselling could be a good idea but I dont know how you can access this re his diabetes, apart from going to the gp. I asked for counseling once for us a few years ago, about sex difficulties but they said he could get counselling but I couldn't! As a partner, I feel you get cut adrift and are expected to just get on with it! Ive broached education with him but he seems very resistant to it.
Thanks for the advice


Please have a chat with your GP/nurse practitioner about what support there is available for you. Seeing someone be ill enough to require an ambulance one multiple occasions is scary and can cause you to then be hyper aware even in times when there isn’t the necessity (I’m not saying you over react or anything like that just that you will be in a state of hyper vigilance and that takes a toll on your health and mental well-being).

One of the hard part of being a carer is allowing the person you’re caring for to maintain their autonomy. It sounds like he could use a little refresh on how best to manage his diabetes and it may help for you to take one of the online courses so that you have a full understanding of diabetes. When you enter a relationship with someone who already has a chronic condition you miss out on the diagnosis and education stage (and lots has changed since he was diagnosed).

I would encourage you to get some counselling as a couple too. Your concerns for him are valid and need acknowledgment. His relationship with his diabetes is his and he may not think about how it affects you and being able to discuss that between you may end up falling into a pattern of him feeling like he’s being nagged or you’re being dramatic and you feeling like he’s being needlessly reckless. It may be that with a third party being able to help you listen to each other that you can find a way through. You may find that he’s depressed or being deliberately reckless or you may find he’s really unaware of how his management of his diabetes is causing both of you issues.

Don’t try to do it all alone. Lean on your support networks including us. And I hope his night time hypos are less severe. The

 

[Cherry63]

@Cherry63 if he's on a basal/bolus regime then there isn't any reason he should need any extra to eat, he just needs to match the insulin to the carbs, there are a few Type 1's that have adopted quite a low carbohydrate lifestyle since being diagnosed, if extra exercise its easy worked around by reducing bolus doses etc, I'm not quite sure what you mean by eating the liquorice would've produced a false high reading

Sorry I mean the liquorice would have caused a spike in the reading but he needed something more long acting to see him through the night, if that makes sense?
No he doesn't carb count at all, he uses lantus as a bolus at night and humalog through the day after meals. Tbh, I'm at my wits end with it all!!

 

[Cherry63]

Hi Cherry. I don't know if it has occurred to you but you have another role in your life, that of carer. I raise this because getting yourself registered into the carers system might find you some of the support you need. It might also jolt your other half into getting his act together. Just a thought.

Thankyou, no I've never really thought about the fact that I am a carer for him at times. What carers registration do you mean?

 

[rebrascora]

I'm not quite sure what you mean by eating the liquorice would've produced a false high reading

Kaylz, I am guessing she means that the liquorice will spike his BG so that it is high at the point when he checks it to go to bed but then it will tail off quite quickly compared to more complex slow releasing carbs and potentially leave him low in the night.

 

[Cherry63]

Hello @Cherry63

Welcome to the forum, and so sorry for the situation you find yourself in. Hopefully by keeping the likes of communication open, and with a bit of support (for both of you) you will be able to successfully resolve this. I have some sympathy with your situation, because I am ashamed to say that I put my late wife through several years of recurrent severe hypos overnight for years. Though the first time I needed to go to hospital really made me have a rethink about how I was dealing with my diabetes - and was part of the reason I joined here.



This is painfully familiar, but there I don’t think he is just being difficult, it is also that the brain, including the memory function, is significantly affected by severe hypos. It is likely that he will have little, if any, memory of the event itself - almost dreamlike. He might have a sense of it having happened by your reaction and memories of coming around, but not of the distressing nature of the event itself. I usually underplayed both the frequency and severity of my severe overnight lows. Research also shows that repeated severe lows effect the ‘aversion’ response that the event usually creates. People begin to normalise them, and no longer see them as being as significant and important to avoid as they actually are.


I am beginning to wonder about the level of support and information that your bloke has been given over the years. Alcohol is a tricky beast to manage alongside insulin and T1 - especially if you’ve had more than just a couple. Initially there can be a big BG spike if drinking beer or cider, but then the alcohol prevents the liver from trickling out glucose as it usually does so BG can crash, especially overnight when the body usually reduces cortisol/glucose output at around 3am. Plus you are less clear thinking, so less likely to spot BG dropping. If I’ve had more than a couple of pints I usually find it important to set an overnight alarm so that I do a quick BG check for safety. Especially as I’m now sleeping on my own.



Yup. You were right, exercise (especially in the evening) is another fairly high risk event. The effect of exercise can continue for 12-24hours after the activity, and reduction in insulin or top-up carbs are a good idea.

Has your husband ever been to anything to learn about the new, more flexible and precise ways of managing diabetes around food, carbs, exercise, alcohol and illness? Things like DAFNE have a great reputation for reducing hypos and improving quality of life.

Finally I would just offer this glimmer of hope. At one stage about 10 years ago I would have been having probably a dozen, maybe more, occasions in the year when Jane would have to ‘bring me round’ in the morning. At the time I would have estimated it as ‘about once every 6 months’ (that’s how far off my appreciation was) but I’ve not had any AT ALL for the past 7 or 8 years. All it took was me finally understanding that I wasn’t quite as good as managing my diabetes as I was telling myself, and that my ‘good’ HbA1c wasn’t everything.

Jane wrote this on our family blog at the time:
https://www.everydayupsanddowns.co.uk/2011/02/at-risk-of-sounding-like-grandma-walton.html

Ok thankyou fir your thoughts, its given me something to think about. I think he needs to refresh his knowledge but he dorsnt think he needs to. Things have moved on tremendously since he was diagnosed 40 years ago and treatments/ diets have moved on. I try to support but he seems not to want to re educate himself I'm afraid. Often the nurses you speak to aren't as up to speed on T1.

 

[Kaylz]

Kaylz, I am guessing she means that the liquorice will spike his BG so that it is high at the point when he checks it to go to bed but then it will tail off quite quickly compared to more complex slow releasing carbs and potentially leave him low in the night.

yes but it would only tail off if he'd covered it with fast acting OR if he's on too much basal and that's pushing him down, there was no mention of whether he'd injected for the liquorice hence why it wasn't clear

 

[Kaylz]

Sorry I mean the liquorice would have caused a spike in the reading but he needed something more long acting to see him through the night, if that makes sense?
No he doesn't carb count at all, he uses lantus as a bolus at night and humalog through the day after meals. Tbh, I'm at my wits end with it all!!

that's true to a point but only if he'd taken insulin for the liquorice or if his lantus is too high a dose, he really should perform a basal test and learn carb counting, without carb counting its very possible his hypo's aren't unavoidable as he isn't covering a certain amount of carbs with a certain amount of units so it could be not enough or too much insulin, lantus is his basal and Humalog would be bolus

 

[rebrascora]

Hi and welcome from me too.
I was on a DAFNE course in October and there was a lady on the course who had been diabetic for 40 years and she too was experiencing regular night time hypos, which often required assistance from her family and occasionally paramedics and like you her family were traumatised and suffering, including her daughter, who I think may have been instrumental in pushing for her to get help. She too seemed to be quite blasé about the hypos and had a much greater fear of being too high, as this was something which was particularly stressed when she was fist diagnosed as a young person due of course to the risk of complications.... but she could not see how her severe and regular hypos were posing a more obvious risk than the risk of complications, having spent 40 years trying to prevent her readings being too high. Of course her HbA1c results has always been good because those hypos were cancelling out any higher readings so the Diabetic clinic were not showing any concern, which reinforced her view that all was OK and she was doing well.
The DAFNE course highlighted a couple of issues which improved her control enormously but she has since got Freestyle Libre and is soon to be getting a pump, both of which will improve her control further and give her family some peace of mind.
I would highly recommend discussing a DAFNE (Dose Adjustment For Normal Eating) or whatever your local equivalent is. One of the benefits of the course is that you mix with other Type 1s and learn how people experience different issues with it their management of it and even develop a support network through it as a result. I am texting a member of my group as I type this, exchanging results and experiences as to how we are getting on and arranging to meet up for a coffee and chat next week so that we can compare notes and perhaps help each other by suggesting different tricks/tactics based on what we learned on the course. There is also the opportunity for input from partners one morning of the DAFNE course which helped all of us to understand how our diabetes affects our loved ones as well as teaching them how to treat a bad hypo. The majority of the course is about carb counting and learning to review and adjust insulin doses to cope with nor only food but also exercise, alcohol and illness. It is a really comprehensive course and the educators are trained to be really non judgemental and teach people how to be safe whatever life choices they make.

As regards his insulin regime it is usual to inject bolus insulin before the meal rather than after and the timing pre meal can make a considerable difference and can vary depending on the time of day, so for me, it is about an hour in the morning, but about 20 mins for lunch and dinner. I am one of those people who follow a low carb diet to help manage my diabetes and it does reduce the risk of highs and lows because if I miscalculate my insulin it is only ever likely to be by one unit and I usually have no more than 5 units with a meal but sometimes just 1 or 2. It is quite a good way of eating for weight loss too if that is your current goal and he is eating with you, but he would need to learn to carb count first so that he reduces his insulin as he reduces his carbs.

PS. I would be encouraging him to have some cheese and biscuits before bed rather than sweets if he is low.

 

[rebrascora]

@Kaylz I think the problem is that he isn't carb counting and may have been eating the liquorice because he is eating diet food with the OP and needed to top up his carbs to use up the insulin he had used, instead of reducing his insulin dose. And of course the carbs from the liquorice will hit the blood stream quickly and show him to be at a reasonable level to be safe to go to bed when in fact he wasn't.

 

[everydayupsanddowns]

@Kaylz I think the problem is that he isn't carb counting and may have been eating the liquorice because he is eating diet food with the OP and needed to top up his carbs to use up the insulin he had used, instead of reducing his insulin dose. And of course the carbs from the liquorice will hit the blood stream quickly and show him to be at a reasonable level to be safe to go to bed when in fact he wasn't.

I agree. If not carb counting, then having Libre will allow you to be reactive to BGs that have already happened, but it’s much harder to be proactive and to prevent wild swings in BG from happening in the first place.

There are apps and meters these days that can really help with the maths of it @Cherry63 and really reduce the faff of it (which can be a hurdle to overcome after 40 years of not having adjusted each dose based on the food being eaten). In my opinion, the truth is that he always needed to be carb counting, and should have been told how to do this at the very beginning.

Diabetes is challenging enough when estimating the balance between food and insulin (and activity, alcohol, illness etc) by counting carbs, but it is SO much harder when just injecting a dose eating ‘some food’ and waiting to see what happens.

Gut instinct is an important part of diabetes management... but it works much, much better on a basic framework of carbs:insulin adjustment.

The apps and meters also often give an estimate of ‘insulin on board’... how much insulin is likely to still be active at a certain point, which can really help in assessing BG after eating, or especially before bed. 6.0 might be fine to go to sleep on... but 6.0 with 3 units of insulin active needs attention, or you are heading for hypoville in the early hours!