Partner of T1 - Help!?

[rebrascora]

I should say that if he decides to start injecting before food rather than after, it would be a good idea to start just before he eats and let his Libre guide him as to if he can extend that to a few minutes or longer.... the Libre will show when the carbs from the food hit his bloodstream (although there is a 10 min delay between BG reading and libre because it measures interstitial fluid) and when the insulin starts working, so that if he gets a high spike after he eats and then it slowly comes down he could inject sooner and wait 5-10 mins before the next meal and see if that reduces the spike and then try maybe 20 mins next time if he is still getting a spike..... Libre is such a wonderful tool.

 

[Cherry63]

Thanks for all of your advice, I will speak with him about that course & carb counting and see what we can do locally. I think we both need some re education and maybe some counselling because this cant carry on. Its driving a wedge between us.

Thankyou so much x

 

[everydayupsanddowns]

Thanks for all of your advice, I will speak with him about that course & carb counting and see what we can do locally. I think we both need some re education and maybe some counselling because this cant carry on. Its driving a wedge between us.

Thankyou so much x

Best wishes to both of you. I really hope you find your way through this, and can look back in the future and see this as a positive moment where things really changed for the better for you both.

“I knew it then, and I still believe,
That your love is no good if the road is too easy”
David Ford, What’s not to love

 

[trophywench]

I'd had T1 for over 35 years when I was offered 'carb counting and dose adjustment' training - and hell - it literally DID change my life. It ALL made total sense to me - no more guesswork - that had always seemed a bit strange in this day and age though it wasn't years ago when I was diagnosed, it was just something the patient had to accept so the easiest thing was to accept it. So I did and my first husband like you and Mike's late wife just had to try to sort me out or ring 999. I regularly woke up in the local A&E thinking, what's going on, we don't have a pegboard ceiling or strip lights ……. ooh botheration - not AGAIN!

Instead of guessing - use LOGICAL mathematics.

Huge relief ! And vast improvement in control - what's not to like?

I did have great difficulty accessing this education - as long as our kidneys haven't failed, our eyes can still see and we've had no amputations - our medics be they hospital ones or at the GP surgery ASSUME we must know everything. Well - many of us don't! but - we are NEVER too old to learn!

 

[Docb]

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?

Carers support is provided by your local authority often through outside agencies. The way in might be through local social services or by self referral. If you are accepted as a carer, and I think you should be because in the event of a hypo your husband could not cope without you, then you will get a carers assessment with a professional who will help you think through things. They should also have knowledge of what is available in your area to get some peer support. Most doctors surgeries will carry leaflets about carers support and how it works in your area. Alternatively you could look up carers support on your local authority web site. Might not be for you but it is worth a phone call to find out.

 

[rebrascora]

And just to clarify, your husbands Diabetic nurse should be able to refer him onto a DAFNE course or their equivalent. DAFNE is a week long course although I think some places they may split it into 1 day a week for 5 weeks.

 

[Cherry63]

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!

Thanks for that can you give me an idea of the sort of apps meters you're talking about. That sounds very useful. I've registered with the learning zone and will do.some of the modules to.update myself. I've looked at the DAFNE courses locally. Ive asked him to make an appointment to see what support he can be referred to. Things need to change now to move on.

 

[Kaylz]

@Cherry63 the Accu-Chek Aviva Expert is a good meter that has a bolus calculator on it, they will only be available from a DSN until December, they are only VERY useful when you have an insulin to carb ratio established though as it uses the sensitivity against your current reading and the carbs your about to consume to calculate a dose, I think the Libre meter also has a bolus calculator xx

 

[Cherry63]

@Cherry63 the Accu-Chek Aviva Expert is a good meter that has a bolus calculator on it, they will only be available from a DSN until December, they are only VERY useful when you have an insulin to carb ratio established though as it uses the sensitivity against your current reading and the carbs your about to consume to calculate a dose, I think the Libre meter also has a bolus calculator xx

Ok thanks, I will show this to my husband, it all feels a bit boggling for me at the mo. I thinks young to have to be a step at a time. But at least at the moment hes saying things need to change. I just hope it's not lip service and his words turn into action this time. I've heard it all before I'm afraid. I'm happy to do my bit but if he doesnt, I dont see what else I can do

 

[everydayupsanddowns]

Thanks for that can you give me an idea of the sort of apps meters you're talking about. That sounds very useful. I've registered with the learning zone and will do.some of the modules to.update myself. I've looked at the DAFNE courses locally. Ive asked him to make an appointment to see what support he can be referred to. Things need to change now to move on.

Sounds very positive Cherry.

For BG meters, the Freestyle Insulinx and Libre handsets both offer bolus advice.

I think there are several apps, but the one I know about is mySugr, which has a bolus wizard in it somewhere.

quite often it’s helpful to get these set up with the help of a DSN. Just to make sure they aren’t going to give massively inappropriate suggestions. 🙂

 

[Cherry63]

Ok thanks for that, any ideas and tips are welcome.
He said hes going to ring to make a review appointment to discuss a few different things maybe carb counting course, advice on meters, apps. I checked the DAFNE courses, they sound brilliant but our authorities dont do them. I asked him to ask about an emergency glucagon injection kit for me to use in a severe hypo scenario (like last thursday) I asked him about this 2 years ago when the last really bad one happened....but nothing! I dont go to all his appointments because hes an adult! But ones I have attended he tends to underplay things a lot. All they seem interested in is the hba1c etc. He says hes got some hypo awareness but from my experience, its next to nothing. Hes resistant to doing his own research, I've sent him links to stuff I've read and he doesnt look at them. Hes not very pro active I'm afraid, I'm finding it increasingly frustrating. Cheers

 

[Toucan]

Hello Cherry,
it sounds as if things are still being very difficult for you.
Maybe it is time for you to have an appointment with the GP either with him or without him, so that they become more aware of his condition, and also the effect it is having on you.
In an earlier message I think you asked about how to get to register as a carer. I think the access may be via the GP, at my surgery there are leaflets on how to do this. It may be appropriate but as @Docb says discussion about this may help your husband understand the seriousness of its situation and the impact on you,

 

[Cherry63]

Thanks I'm going to do all those things for myself. I'm going to see what actions he does now for himself. If hes taking things seriously he will make changes/take some action. He knows how I feel, I've sent him information and links to things on diabetes uk. I've even shown him that I've registered on this forum and some of the earlier thread. I cant be any plainer, You can lead a horse to water but cant make him drink can I

 

[Thebearcametoo]

Couples counselling is usually through Relate and it can be a bit hit and miss as to how good it is (plus it depends if you both want to resolve issues). Costs vary depending on your circumstances. It’s possible for you to go alone if he won’t engage. But if that was the case then getting some help via the NHS or MIND may be better for you.
I hope he hears your concerns and starts to take some more responsibility for his actions.

 

[grovesy]

Ok thanks for that, any ideas and tips are welcome.
He said hes going to ring to make a review appointment to discuss a few different things maybe carb counting course, advice on meters, apps. I checked the DAFNE courses, they sound brilliant but our authorities dont do them. I asked him to ask about an emergency glucagon injection kit for me to use in a severe hypo scenario (like last thursday) I asked him about this 2 years ago when the last really bad one happened....but nothing! I dont go to all his appointments because hes an adult! But ones I have attended he tends to underplay things a lot. All they seem interested in is the hba1c etc. He says hes got some hypo awareness but from my experience, its next to nothing. Hes resistant to doing his own research, I've sent him links to stuff I've read and he doesnt look at them. Hes not very pro active I'm afraid, I'm finding it increasingly frustrating. Cheers

Some areas have their own version of the DAFNE and called by local names.

 

[Cherry63]

Couples counselling is usually through Relate and it can be a bit hit and miss as to how good it is (plus it depends if you both want to resolve issues). Costs vary depending on your circumstances. It’s possible for you to go alone if he won’t engage. But if that was the case then getting some help via the NHS or MIND may be better for you.
I hope he hears your concerns and starts to take some more responsibility for his actions.

Yes thanks for that, I've looked at relate already and can see the costs involved. We asked for counseling a few years ago because of sex issues/problem all related to the diabetes. We were told he could have counselling but not including me! I've not asked at the drs about counselling but I will do. Hes rung the diabetic team today and they can't fit him untill June! Even though hes recently had a hypo that was life threatening and needed medical intervention! Hes going to go to the diabetic drop in clinic to see if they can do anything. Thanks for your suggestions.

 

[Cherry63]

Some areas have their own version of the DAFNE and called by local names.

Ok thanks didnt realise that. Hes rang the diabetic team this morning and they cant fit him in till june at the quickest. Hes going to try the drop in clinic, see if they can do anything. Thanks

 

[rebrascora]

Hi again.
Just wondering...does he drive? I wonder if he realises that these incidents seriously jeopardise his driving licence. Sometimes that can be more of an incentive to take action than more fuzzy things like relationship problems, which are not so black and white. I am not saying that your relationship is less important but I think he may see it as a fairly safe issue even though you feel it could cause a split, but the guidelines for DVLA are pretty cut in stone and whilst he might decide to lie about it on his application form, there is the potential for a doctor to advise revoking his licence providing they have evidence and it sounds like he might be getting close to meeting that criteria if paramedics are being required.

Just thinking you might use that argument to help encourage him to get help and gain more control.

 

[Cherry63]

Hi again.
Just wondering...does he drive? I wonder if he realises that these incidents seriously jeopardise his driving licence. Sometimes that can be more of an incentive to take action than more fuzzy things like relationship problems, which are not so black and white. I am not saying that your relationship is less important but I think he may see it as a fairly safe issue even though you feel it could cause a split, but the guidelines for DVLA are pretty cut in stone and whilst he might decide to lie about it on his application form, there is the potential for a doctor to advise revoking his licence providing they have evidence and it sounds like he might be getting close to meeting that criteria if paramedics are being required.

Just thinking you might use that argument to help encourage him to get help and gain more control.

Yes I've mentioned the DVLA to him as a consequence. I left that with him for a few days. I didn't realise that the dr might take it out of his hands. If loosing his licence is the thing that spurs him into action, so be it.

 

[Mel W]

This is a very belated response to Cherry63's message but I just wanted to say thank you Cherry. This is the first time I've ever heard anyone say anything like I feel. I have been with my partner for 20 years, he is a T1, and has been for 30 years. I am at the end of my tether with trying to care for him through hypos that leave me in bits and my young daughters traumatised. He uses Dexcom and a pump and it is better than when we first got together and a lot of time is controlled. But we've still had two massive hypos in the last six weeks, resulting in paramedics coming, plus lots of low blood sugars like last night. He is a full foot taller than me and gets violent in hypo which means I have to restrain him as the paramedics can't, and even with low blood sugars will say mean things. My daughter was so worried last time she threw up with the stress. I cannot show any frustration at all during low blood sugar or hypo because that makes him worse. I am exhausted with this and I know everyone with T1 here will immediately say - as he does - that I don't know what it's like to have this condition and I know I don't and I feel guilty for even complaining. But for 20 years I have not been able to say how I feel to live with someone I have to watch over constantly and monitor. He says rightly he is not able to have a drink and party like anyone else. But neither can I, because even if I do I'm the one who has to be ready to call 999. Sorry been up since 4 with the latest mini-hypo so a bit overwhelmed. None of my friends have every seen him have a very bad hypo because they happen mainly at night so there is no one I can talk to.