Advice for an uncontrolled Type 1

[lucyJS]

Hi everyone,
I am here about my Dad, he is 56 and a type 1 and has been for 20 years. However he doesn't take his diabetes seriously and I find myself constantly worrying myself sick about it, losing sleep, and nagging him about it. His father had diabetes also and died of a heart attack at 56. I am 18 and at uni and after years of this worry I feel like its now or never. I think he is willing to change and very capable but he just doesn't have that spark or motivation! That's where i'm going to try and help kick start him and hope he will take over once he sees the benefits for the first time. Unfortunately he's got himself in such a rut I think he has got used to not feeling well and blames the diabetes.

I do think he may be in denial even though he has had diabetes for so long. He does take his injections however he has never taken any interest in reading about his diabetes or anything and he pretty much just lives and eats as if he didn't have it. He doesn't like to take his blood sugar, he says it's because it reminds him and that its pointless.. for the majority of the time I think he likes to forget. He doesn't manage to keep his BS stable with highs and lows. Unfortunately he does have hypos in the night now and then which he finds terrifying yet its not enough to get him to change .

The positives are a year ago we got a dog and he has been much more active since, going on a walk nearly daily and he really enjoys how it makes him feel, also he does improve how he is eating etc briefly when I have a nag as he wants to make me happy...I feel if I had a concrete plan for him to follow it hopefully it would be more of a long term change :/

If anyone who is a type 1 or knows a type 1 who manages their diabetes I would be so so grateful for any advice on where to start. I've been reading a lot of this forum but am feeling overwhelmed by all the different info! Starting from scratch from diet, carb counting, exercise to anything else you think may help him. He was talking to a man he met about a pump the other week? For someone who has highs and lows of blood sugar I image one would be useful but also hard to get hold of?! Also if someone could help me with HbA1c tests and other things beneficial to type 1's that would be amazing. I do know a quite a bit about type 1 but hes very secretive about the things he should be doing at the doctors and what other successful types 1 actually do in their day to day lives! Hopefully I can get him signed up to this forum I think it would be good for him. I believe its never too late and I wont to get my Dad as healthy as he can be because life is too short to carry on this way! I realise he needs to make the effort himself and this is the final big push I am going to make!
This really will save our lives Thank you so much for any advice.

 

[Pneu]

Morning Lucy..

Firstly that's a great post, secondly you are a credit to your dad and your family.

You are right to be concerned about your dad's lack of control, without actually knowing what his HbA1c or blood glucose readings are its hard to say how much damage he is doing.. on the positive side having been a diabetic for so long his control is unlikely to be totally terrible if he hasn't had complications thus far...

In regards to control if you dad follows the following steps he will see big improvements:

1. Test, test, test test... testing hurts, its not pleasant and none of us like it but it is essential if your dad is to take control. At a minimum he should test before a meal and two hours post meal..

2. Keep a record... Keeping a record of tests and injections and carbs is not just to please the diabetic clinic or GP... without it your dad can't see patterns and control his diabetes.. Your dad should make a note of all blood readings.. the carbs he eats... the insulin he injects.. After only a few days he will see trends in your sugars i.e. high at certain times or 2 hour post meals are high etc... he can then start to act on this..

3. Carb counting... Could look at a course(or learn about it himself!) you don't need to go on one (I have never been on one).. I just measure the carbs from the packets and then I worked out my ratio's.. starting at 1 unit of rapid per 10g of carbs until I figured out what I needed..

If your dad tests and record keeps religiously for two weeks and acts on the information by adjusting dose then he will see a massive improvement. At the end of the day however no one can force your dad to change he needs to make that decision. Believe it or not diabetes is very easy to ignore and some of us ignored ours for years just like your dad.. Perhaps you can also talk to and involve other members of your family to try and get him to see sense.

 

[Elc1112]

Hi Lucy,

I'm sorry to hear you're so worried about your dad. My dad has been ill recently (nothing to do with diabetes) so I can relate. Remember when it was them worrying about us and not the other way around?!

Anyway, to answer a few of your questions... As you know, type 1 diabetes is controlled by balancing insulin with carbs. The insulin brings your sugars down, the carbs bring them up. The less carbs you have, the less insulin you will require. It also, for me at least, makes my diabetes easier to manage and helps to stabilise my sugars. People carb count so that they know how much insuling to give - you'll hear a lot of people talking about ratios. This is the number of units of insulin you need per 10g of carbs. It differs from person to person. Your dad's doctor/diabetic specialist will be able to offer some advice on where to start.

Diet/wise - in theory, he can eat whatever he wants as long as he takes the correct dosage of insulin to compensate. I try and follow a low carb (within reason - need some carbs to stop hypos) and low GI diet. Foods with low GI release sugar slowly so are good for maintaining a stable sugar level. It's also important to keep an eye on blood pressure and cholesterol and avoid foods that will raise these. You're at much higher risk of complications if you have high BP or cholesterol.

Exercise is important regardless of whether you're diabetic or not. It will help your dad to keep his sugars, bp etc under control. Try and find an exercise he enjoys - even if it is just walking the dog. It all counts!

I've always stuck to injections rather than the pump, for personal reasons. My understanding is that you need to have reasonably good control to qualify for one. I'd suggest you/your dad talks to your diabetic specialist about this.

In terms of hba1c - this is a measure of average blood sugar levels over a 12 week period. It should be between 5 and 7, usually. An hba1c of 6.5 does not suggest that your average sugar level is 6.5 - I think it's an average of around 8. There's a great hba1c converter on this website that you'll find useful. The lower the hba1c the better. High readings increase the risk of complications. They recently changed the units used to measure Hba1c, so you'll hear some people talking about readings of 50, for example. This is roughly 6.5 using old units. Again, loads of info on this site about that.

My sugars are under control now but haven't always been. I went through a period of not caring, not testing, not injecting. It can be hard to snap out of but the results are so worth it. Talk to your dad and let him know how worried you are. Suggest going along to his next appointment so you can gain a better understanding of what he is going through?

Hope this has helped and I hope you're dad's control improves. Any other questions, just ask

Take care
Em

 

[iHs]

Hi Lucy

Do you know what your dad's hba1c (3 monthly blood tests done at hospital) blood tests are? I take it that your dad's diabetes care is under his GP so he will be needing to see a DSN at the surgery every 6 months at least.

Also, do you know if he is using Lantus/Levemir plus a bolus insulin for his meals or is he using 2 injections per day of pre mixed insulin?

 

[lucyJS]

Hi Thanks so much for your help everyone this information has been so so useful and I'm trying to compose a plan to confront him with when I get home this weekend - the sooner this stops the better.

Do you know what your dad's hba1c (3 monthly blood tests done at hospital) blood tests are? I take it that your dad's diabetes care is under his GP so he will be needing to see a DSN at the surgery every 6 months at least.

Also, do you know if he is using Lantus/Levemir plus a bolus insulin for his meals or is he using 2 injections per day of pre mixed insulin?

He takes novarapid three times a day at each meal and detemir once in the morning and once at night. Unsurprisingly to me he was clueless when I asked him about his hba1c and had nothing to tell me just replying with whats that who does those - something that needs to change He mentioned something about in the consultation they mention a figure but doesn't take a note of it.. I'm not sure if this could be it? I've nagged him to call them up tomorrow and try and see what It was. In the meantime until he does to his next one what do you suggest I do?
I don't even know if he goes for them. Apart from going to get the hba1c's every three months and 6 month checks is there anything else he should be doing and isn't telling me? Thankyou everyone

 

[Elc1112]

I have one annual review where they do a blood test (hba1c, cholesterol etc). They also check my feet - checking the pulse and sensations. Problems here are an early wanting sign of diabetic neuropathy, which can be quite nasty. I also get my eyes checke once a year. I don't mean for long or short sightedness, but for signs of diabetic reinopathy which, if left untreated, can cause blindness. I have this done at a hospital. They put eye drops in to dilate my pupils and then take photos of the bak of my eyes.

I then have a mini check half way through the year - just a blood test and general chat with te diabetic nurse.

Hope things go well on the weekend. Let us know x

 

[weeezer]

what a lovely daughter you are. it might be the kick up the bum yr dad needs - to realise how concerned you are. i know where you're coming from, my mum is t1 (she is 61, had it for 37 years) and i used to be very frightened at times, i'd worry about her a lot & lose sleep. she is the kind of person who doesn't want to know everything about it, just bobs along. she had a few years where she stopped attending clinics & so wasn't being tested & fell out of the routine checks. she wasn't really testing herself much either. she certainly didn't know what to do about it if she was getting high readings, didn't realise she could be pro-active about it and adjust insulin etc.

then i was diagnosed with type 1 at 26 back in 2000, and although i'm not the world's most knowledgable diabetic, the info i learned helped me to stop worrying so much about my mum, when you understand something it becomes alot less frightening, i sure hope this is what you find. i was amazed that my mum didn't really know what a hbA1c was and never knows what hers is, me becoming diabetic was slightly helpful because it meant i could legitimately question her about her treatment & insulin etc. she got back under the care of a consultant and started attending clinics every 6 months.

anyway, she has always been overweight, until a year ago always smoked, but remarkably has no 'diabetic complications' - she had high blood pressure and took medication but since stopping smoking it has come down to normal levels. just a bit of background story to hopefully reassure you.

what really helped her was attending a diabetes education course (you might have come across it on here DAFNE - 'dose adjustment for normal eating' where you learn how to calculate carbs in/insulin needed, like pneu explained earlier. there are lots of different versions that local authorities run that do same thing) - when she was diagnosed, she had been taught to take a set amount of insulin and that she had to have a certain amount of 'portions' of carbs in every meal. this course was a revelation to her - to learn what ratio of carbs to insulin was effective for her and to learn how to adjust it as the mood took her! (she still doesn't know what a hbA1c measures tho and said her last one was 10 point something which is high). she still views it as something that has no logic and goes all 'i give up' when sugars are running high and she can't get them down.

i attended one 5 years ago when i was living in australia and it was amazing, i met other t1's and we shared experiences & i learned alot. i have just pestered my diabetes specialist nurse to refer me to the dietician/diabetes clinic @my local hospital so that i can go on another course (i would like my knowledge to be refreshed & would love to be involved with other t1s again).

for the record i am on the ball at the mo & have started testing lots & i like being in control, i have had many periods where i haven't tested & have just injected my insulin and just hoped for the best! like other posters have said, its easy to ignore.

in my opinion this would be a great way to get your dad in control of his diabetes - he would meet others & see how others deal/cope with it all and would learn lots about it. i have never been 'offered' this but when asked they are happy to help & find a course for you.

sorry that i've rambled on forever, hope this is a teeny tiny bit helpful to you in some way. good luck to you when you have your chat with him!

weezer x

 

[Dannymum]

Hi Lucy,
Sorry to hear about your Dad's situation. Your father needs to know his HBA1c level, the clinic would have records of this, maybe you can speak to them. A non diabetic level is around 5. But if he is 6-7, that is OK.

Type 1, is a difficult condition to control, BUT there are things that you can do to help yourself.

Reducing the carbohydrate intake is a very good start, aim for 60-80g per day. Try to avoid bread, potatoes, starchy carbs/ processed foods and eat more vegetables, and meat. He needs to carb count with meals. Try to eat low GI foods, eg wholemeal pasta, beans, fish.

An excellent website I found is www.D-solve.com, which gives advice on the low-carb approach. It is written by Type 1 diabetics for them. People have achieved great results.

Also, it will really help if he can get more active, walking after meals also helps. He should try to get active everyday. It makes the insulin work better.

Hope this helps, you are doing a great job trying to help him, don't lose hope there is a way to improve.
Lois