Struggling to cope with husband's diagnosis

[AliceKeates]

Hi there everyone.
My husband was diagnosed a few days ago with diabetes. We're still waiting on the results of a few tests but they think he's probably Type 1. This is a shock as he's 38. He's finding it hard to get his blood glucose down, but since he feels fine and he hates hospitals he's avoiding doing his ketone readings in case it looks like he needs to go back in.
I'm finding the whole thing completely terrifying, and I feel so helpless. I know it's his condition, not mine, so I'm trying really hard not to nag or to pester him about his readings, even when they're higher than the doctors said they should be, but I want to do what I can to make sure he's as ok as he possibly can be.
Anyone out there -- diabetics or partners of diabetics -- who can offer help or advice on how to manage my own feelings and when (if ever) to push him into more active treatment? At the moment I know I'm just making things worse for him by doing things like bursting into tears when I look at the maple syrup I bought a few days ago for pancakes.
Please help!

 

[CathyB]

Hi Alice, I’m sorry things are difficult at the moment, it must be a shock for you both. There are others here better qualified to offer advice than me as I’m type 2 so it’s a little different. What I would say is to try and calm down, there will be lots you can do to help him, being in better control of his diabetes will certainly help keep him out of hospital, where ignoring things is likely to have him back in
You will get support here, everyone is lovely so do ask anything you need.

 

[stephknits]

Welcome Alice, glad you found us. I diagnosis of diabetes is a scary time - for both of you. It is perfectly understandable that you are worried and as you say, it is not in your hands to control. I think getting the balance right between being supportive and standing back is very difficult. I guess you know how your husband normally reacts. I sometimes think how I would have heeb if it had been my husband instead of me that was diagnosed (I was diagnosed type 1 at 42) and I think I would have really struggled. As it was, I was quite ill be the time I got diagnosed, so didn't really worry about myself as I was so exhausted.
What insulins is your husband on? What are his levels like?

 

[Martin9]

Hi @AliceKeates
The best way you can help your Hubbie is to help him with his diet,and to limit the amount of carbohydrates in his diet it's important in helping maintain healthy blood glucose levels, carbohydrates are both the simple sugars found in sugar, cakes, sweets, syrups, chocolate, honey etc and also the starches found in breads, pasta, rice, potatoes, cereals etc.
Counter intuitively it's ok to eat more unsaturated fats so a high fat low carb diet is what most diabetics find helpful so a couple rashers of grilled bacon and a poached egg could well be better than a bowl of cornflakes for breakfast.
Find out about the diet, the advice it's all out there on Google and help him with making more healthy informed choices about diet, it's better than you worrying yourself about it.
Take care and remember people can live comfortably with diabetes if the right diet and lifestyle changes are made...!

 

[Radders]

Hi and welcome.
Could you encourage your husband to join us? For the first 13 years after my diagnosis I had never spoken to another soul with the condition and just struggled on between hospital appointments. Since coming across forums like these I have learned so much more about managing the condition than I have ever found out from the professionals.

 

[Flower]

Hello Alice and welcome 🙂

I'm sorry you are having such a frightening time. It is really difficult coping with a diagnosis either yourself or for someone close to you. Type 1 if that is what it proves to be can happen at any age not just in children.

Whilst you are waiting for test results I would encourage him to test for ketones if his blood sugar readings remain high in the teens, 20's upwards. He may not be producing ketones but they can develop quickly and if that is the case it does require quick action and hospital admission.

A diagnosis is a huge shock with no time to adapt to the new situation. It is an emotional roller coaster at the start but in a short while once things become established I hope you'll feel less frightened about the situation.
If you need someone to talk to about how you are feeling and any other advice, the Diabetes UK helpline is a great service offering support to anyone affected by a diagnosis, https://www.diabetes.org.uk/how_we_help/helpline.

I wish you both well. 🙂

 

[Ralph-YK]

Welcome to the forum Alice from a T2 only on metformin.
Yes it can be scary. I can only give a little pratical advice. As diabetics we have to manage carbohydrates. It's not food generally that affects blood glucose levels. It's carbohydrates in particular (rice, bread, potatoes, pasta etc). It is possible for diabetics to eat some of these. You have to figure out the amounts. This can be done.

We're still waiting on the results of a few tests but they think he's probably Type 1.

I'm going to take it that he's on insulin. This should lower his levels. As such, don't dump all carbs yet. Self testing will show you what is happening. Keep a food diary, along with a record of his levels. Take readings before and 1 & 2 hours after eating. You should start to see a patten. This will help with making adjustments to food. Also it will help with using the insulin.
Since he could go low (hypo) keep maple syrup.
And try to be mater of fact when it comes to meals.

 

[AliceKeates]

Hi all, and thanks very much for all your answers. I really appreciate the support. As I'm sure you've all experienced, it's such a relief to speak to people who know about the condition from experience.

@stephknits -- Thank you so much for your support and encouragement, I really appreciate it. He's been on Lantus 10 units once a day and Novorapid 3 units before each meal for the two days since diagnosis. The doctor called this morning and suggested, on the basis of his levels, that he should adjust up to 12 and 4 for a day or two until he's within more acceptable limits. His levels in hospital while we were there were getting all the tests done were (at their worst) 6 for ketones and around 28 for blood glucose. Fortunately despite the high K levels his blood wasn't showing any signs of becoming acidic. Since then they've been down as low as 15 for BG and 0.5 for ketones. Today, though, the BG was up at 20 again, and he didn't want to test for ketones. Happily it's gone back down to 15, and I'm expecting it to fall further after another insulin injection and a fairly low carb supper. The thing that's very difficult for him is that he feels completely fine, so it's hard for him to believe that this is as serious as the doctors say. Even in hospital on 28 and 6 he looked a picture of health. I was limping about with swollen feet and my obviously pregnant tum and every time a new doctor came to see us he or she would be completely confused for a moment about who was sick. Honestly, it just felt like a hoax.

@Martin9 -- Thanks for this advice! I'm working on finding foods rich in healthy fats as he's also got high cholesterol. Lots of salmon and avocado so far. All suggestions very welcome.

@Radders -- Those 13 years must have been very tough and lonely, I'm sorry. Husband isn't the type for internet forums or support groups, unfortunately. If he were to start talking about feeling low or wanting someone to talk to I'd definitely guide him in this direction, particularly after getting such kind responses from all of you, but I'm trying super hard not to push him to deal with the situation in any way other than the one he chooses.

@Flower -- Thank you. There's something very reassuring about being told that it may not be so frightening after a while. The internet is, quite reasonably, full of warnings and stories of hardship, and whilst I appreciate being aware of the dangers I badly need to feel that there's a way back to something that feels more normal.

@Ralph-YK -- I hadn't thought of a food diary, that's great advice and will make me feel useful if nothing else. I'll get straight on to that. At the moment he's not generally testing after meals, only before -- this is what the doctor advised, and it's what he finds manageable for now -- but it will be useful to make a note of what seems to result in a high reading later on anyway, I'm guessing.

Thanks again for all your support. Husband isn't ready for us to tell friends or family -- quite reasonably he wants to know the full picture and to have time to accept it before he has to handle everyone else's reactions -- and I've been going a bit mad trying to process it all whilst being worried sick that he's going to end up in hospital.

 

[Ralph-YK]

The doctor called this morning and suggested, on the basis of his levels, that he should adjust [his insulin]

At the moment he's not generally testing after meals, only before -- this is what the doctor advised, and it's what he finds manageable for now

I think, since they're adjusting his insulin, that will be a reason not to do anything too drastic with his diet yet. As more insulin reduces BG levels. Others here know more about taking insuling than I do though, and the inital process of establishing the units to use.

 

[SB2015]

Hi Alice and welcome to the he forum. Things are pretty difficult to take in at the start, and the team will want to get his levels stabilised gradually. As others have said it is the carbs (not just sugars) that will impact on his glucose levels, but it will take time to settle so he needs a bit of patience st first. Once they have brought down his levels they will then hel hime to learn how to keep them in tearget as much as possible.

It was brilliant when I had a chance to go an education course for T1s. It gave me the chance to talk to others managing the condition on a daily basis and also explained what had happened once my body triggered the condition and how to manage it. In some areas this is called Dose Adjustment For Normal Eating (DAFNE). Your husband could ask what education is available in your area.

An excellent book that was recommended to me on here is Type 1 Diabetes in Children, Adolescents and Young Adultsby Ragnar Hanas. Ignore the age reference. I was 53 at diagnosis and still found it very useful. It is well written and clearly explains so much. It is regularly updated with the latest technology and well worth the expense. A good reference book that I still dip into after 10years.

If you have any questions just ask. We are here to help each other.

 

[trophywench]

Hiya - Ralph we do know how to adjust insulin - it's trial and error to begin with is what it is. There is a kind-of formula they use for starters based on weight and clinical presentation - but it's still suck it and see.

However Alice, your husband does need to start 'treating it seriously' because the consequences of not doing so are very serious. However, let's not go there - instead - why don't you purchase a really good book that explains nearly everything to both of you, in understandable terms but without being patronising. You'll think I'm completely potty when I tell you the title is 'Type 1 Diabetes in babies, children and adolescents' by Ragnar Hanas.

It applies the same at any age though - Alan, the Administrator in charge of this forum was at least as old as your husband when he was diagnosed and found it very useful.

Providing he relaxes about hospitals he will, in the fullness of time be taught properly how to adjust his insulin doses to match the carbs in whatever he's eating - cos it's not static and fixed in stone. Bearing in mind we want to eat 3x a day - it's essential knowledge to live with it and keep well.

It's a slow process getting your heads round it and your reaction is actually perfectly normal! Now - how does husband feel - would he like to weep too, except I'm a man so I can't?

 

[Martin9]

One last peice of advice for tonight, don't be going along with any lower carb diet yourself while pregnant...!

 

[TheClockworkDodo]

Hi Alice and welcome 🙂 - sorry to hear about your husband's diagnosis, but please try not to be terrified about it! I was diagnosed aged 44, and it's much more common than people think for adults to be diagnosed with type 1 (we have quite a few members here who were diagnosed type 1 in their 30s, 40s, and 50s).

My diabetes specialist nurse (DSN) advised me not to google, and I'd pass that advice on - there's so much information about diabetes out there which is scare-mongering and often it's just plain wrong, so it's likely to make you more scared, and unnecessarily so. Diabetes is manageable, and there's no reason for it to lead to any complications (or hospital admissions) if it's managed - we have members here who've had it for 50 years or more!

I hate hospitals too, but I survived a week in one with Diabetes Ketoacidosis when I was diagnosed. For most of it I felt too ill to care about being there. I would suggest to your husband that the more he tests (both glucose and ketones), the more he will be able to control his diabetes, and the more he controls it, the less likely he is to end up in hospital. So if he wants to stay out, the answer is to test regularly and learn all he can about diabetes so he can control it and not let it control him. It will help if he has the contact details (ideally email address) for a DSN, so if he hasn't been put in touch with one, try to get him referred to one (and don't be fobbed off with a surgery diabetes nurse, who will not be anything like as knowledgeable). Emailing mine for advice about things like adjusting my insulin has meant I've been able to keep my trips to hospital as an outpatient to an absolute minimum!

Although cutting carbs right down is good advice for type 2s, if your husband does turn out to be type 1, he will be able to continue to eat most things, but he will need to be careful to inject insulin for any carbs he eats. In time he will learn how to adjust his own doses rather than having fixed ones, and that will mean he can eat what he likes when he likes. Tonight, for instance, I ate home-made rhubarb crumble with sugar sprinkled on it, and it didn't raise my blood sugar at all (in fact, I had a little too much insulin for it and ended up low (hypo), so I had to have some fruit juice to get my blood sugar back over 4!). It's not a good idea for your husband to eat something like that while his blood sugar's so high, but nor is it a necessary for him to completely change his normal diet just yet - it's best if they keep adjusting his insulin to cover what he normally eats, and then he can work out what to cut down and whether there's anything which he needs to cut out completely (this varies from person to person - for some it's pizza, for some bananas, for me - bizarely - it's eggs, which are ideal for most diabetics as they're carb-free!).

Good advice for any diabetic though is to avoid white pasta, white rice, and white bread (the brown versions are better), and anything really sugary like honey, dried fruit, fruit juice, sugary drinks like lucozade, and sugary pre-packed breakfast cereals. But if your husband is type 1 he will find - once he's got his blood sugar levels down - that he will sometimes have hypos, and then he'll need something like fruit juice - or as Ralph says, that maple syrup - to get them back up again.

This is the book SB2015 and Jenny were talking about - https://wordery.com/6th-edition-typ...ung-adults-6th-edn-ragnar-hanas-9781859595664

 

[Grannylorraine]

Welcome to the forum. Sorry your partner has had this diagnosis, but at least you are there supporting him. To be honest I never even thought about what effect my diagnosis had had on my other half. I can't really give much advise as I am type 2, but with your support he will get through this, and as you can see from some of the responses there are Type 1 members who are giving you wonderful advise. But we are all here to support you both.

 

[AliceKeates]

One last peice of advice for tonight, don't be going along with any lower carb diet yourself while pregnant...!

Argh! It's a nightmare! My instinct is just to shrug my shoulders and get on with eating the same (probably much healthier) diet that I'm now trying to plan for my husband, but since I'm naturally at the bottom end of the normal BMI range and I've got a bun in the oven it's not really an option. Guess I'll just have to load up on carbs when I'm at work.

 

[AliceKeates]

Hi Alice and welcome 🙂 - sorry to hear about your husband's diagnosis, but please try not to be terrified about it! I was diagnosed aged 44, and it's much more common than people think for adults to be diagnosed with type 1 (we have quite a few members here who were diagnosed type 1 in their 30s, 40s, and 50s).

Thanks so much for this. Since getting everyone's advice last night I've been doing lots of self-education online to work out what fun things I can still cook for my guy, and I've ordered the book you recommend. Don't think he's going to be a big fan, but I'm finding that so long as I don't pester about his BG testing he's quite open to my researching and talking him through how carbs and blood sugar work, so hopefully this is the area in which I'll be able to help to bear the load. It helps that I do 90% of the cooking in our household anyway, so it makes sense for me to take on the nutrition role. And as time goes by and he starts adjusting his doses to suit his meals I should be able to do the calculations at least for our dinner for him, which might make it feel more like a team effort too.
It's great to hear that he'll be able to eat whatever he wants whenever he wants too. I think that will give him a really good incentive to get on top of testing and working out what gives him spikes and what doesn't. Anything that helps him to live a life that feels more rather than less like it did before the diagnosis is going to be really helpful.

 

[AliceKeates]

Hiya - Ralph we do know how to adjust insulin - it's trial and error to begin with is what it is. There is a kind-of formula they use for starters based on weight and clinical presentation - but it's still suck it and see.

However Alice, your husband does need to start 'treating it seriously' because the consequences of not doing so are very serious. However, let's not go there - instead - why don't you purchase a really good book that explains nearly everything to both of you, in understandable terms but without being patronising. You'll think I'm completely potty when I tell you the title is 'Type 1 Diabetes in babies, children and adolescents' by Ragnar Hanas.

Thanks for the advice and for the reassurance that my reaction is fairly normal -- that really helps. I have ordered this book and I'm really looking forward to feeling a bit more informed. There was so much to take in at the hospital, and the internet generally offers, um, varied advice, so reading something authoritative and calm will really help. On the 'treating it seriously': oof, I know, I really do. To be fair to him I think he's prepared to be pretty serious about it. After I left you all my panicky message I managed to get him to open up about it a bit more, and he's clearly ready to do whatever it takes to stay healthy, but he needs to handle it in the way he finds manageable. For now, that's following the doctor's orders in terms of what to take and when, and the compromise he's made with himself in terms of testing for ketones seems like a safer and more rational one than I had initially realised. He's definitely finding it very hard, but I think it was good for him to admit that and have a talk about it. I'll work on being a better listener!

 

[trophywench]

Please do!

There is shedloads of info (correct info!) on the Diabetes UK website too.

Plus the nurses in hospital diabetes clinics are great. These are specialist nurses, who take an extra degree once they are working full time in diabetes (so they don't work in doctors surgeries only hospitals) and they have always been pretty brill as far as I'm concerned as they fully appreciate what actually living with diabetes full time, involves both physically and mentally. We all do daft things sometimes and my old nurse (retired now) who I regarded as one of my friends even though she wasn't LOL often said, That may not have been the best plan, Jenny! before we both had a giggle - and then sorted out what I should have done instead.

I regularly go to the clinic every 6 months - however I can ring any time I need to and one of the DSNs will ring me back or if it's something where we need to be face to face (I have a pump and say I have a problem with it or something) they'll offer to see me as soon as the same day. Nobody wears a uniform and it's very informal indeed. At my hospital - it has a different front door even so you don't need to walk through any other part of the hospital buildings. (Unfortunately it's the same carpark and of course that's not without its own problems! LOL)

 

[khskel]

Can't add much to what everyone else has said so far.
I would advise getting a copy of Carbs and Cals which lists the carb contents of many common foods. I found it very useful in the first year of diagnosis.

If he does get confirmed as type 1 he will in the fulness of time be able to eat what he wants in theory providing he can match his insulin to his carb intake.

 

[TheClockworkDodo]

A couple of other thoughts - if you can get your husband to drink loads of water - pint glasses full of it - when his blood sugar is too high, that will help to get it down, and it's a really good thing to do when he knows his reading's too high but isn't confident about adjusting his own insulin. Other drinks, except maybe herbal teas, will not have the same effect though.

And it will also be a good idea if he gets some exercise, but that doesn't need to be going to the gym or doing anything strenuous, if that's not his thing - just a brisk walk round the block will make a surprising amount of difference. And most people find mowing the lawn is an excellent way of lowering blood sugar!