Appointment with diabetic nurse / pain management clinic / hip & knee consultant

[Molly56]

My partner has an appointment on Friday with the diabetic nurse to review his recent blood test results and for his annual diabetic review.

Without being too pessimistic I have the feeling that his blood test results will not be great – they were high at the last appointment (they always have been high) and my guess is that they are still high / very high despite being prescribed yet another tablet (Linagliptin) at his last appointment with the nurse.

I also get the impression from his GP and the nurse that he is probably on the maximum dosage of tablets possible before having to move onto insulin.

In order to make the best of the appointment I feel that I need to go pre-armed with a list of potential questions in case the nurse recommends that he does have to move onto insulin. At this point I will just mention that he is adamant that he “will not take any more tablets or go on to insulin” so fear I have a battle ahead!

Does anyone have any words of advice in terms of what I should / could ask?

Forgive my ignorance, but will going onto insulin mean that he will still have to take the medication that he already has or will it be a substitute for some of his current tablets / medication?

What other implications will this have in terms of testing (he doesn’t currently test / told he didn’t need to) and any other changes in lifestyle / diet / exercise (or lack of!) / day to day things.

Feel I need to take control of the situation to some extent as know that he won’t –any advice you can give so that I feel more prepared would be appreciated, thanks.


Type 2 diabetic ; controlled (not controlled!) by medication, see other post “Living with a partner with uncontrolled type 2 diabetes”

 

[mcwarrior]

I just got diagnosed on Monday with type one and when straight on to insulin on Tuesday, so still coming to terms with it, He will be fine, if i can do it so can he. Not to helpful about questions im afraid, but you will be given all the info you need. I was in there for nearly 3 hrs. Back on Friday as well to, so good luck, and go in with him.

 

[Molly56]

I just got diagnosed on Monday with type one and when straight on to insulin on Tuesday, so still coming to terms with it, He will be fine, if i can do it so can he. Not to helpful about questions im afraid, but you will be given all the info you need. I was in there for nearly 3 hrs. Back on Friday as well to, so good luck, and go in with him.

Thanks, was planning to go in with him anyway to hear first hand what he needs to do as I know that he won't remember what is said - he has a shocking memory at the moment!
Hope it doesn't take too long though as I am due to go to work straight after the appointment. Hope all goes well for you on Friday too.

 

[graj0]

I also get the impression from his GP and the nurse that he is probably on the maximum dosage of tablets possible before having to move onto insulin.

In order to make the best of the appointment I feel that I need to go pre-armed with a list of potential questions in case the nurse recommends that he does have to move onto insulin. At this point I will just mention that he is adamant that he “will not take any more tablets or go on to insulin” so fear I have a battle ahead!

Does anyone have any words of advice in terms of what I should / could ask?

Forgive my ignorance, but will going onto insulin mean that he will still have to take the medication that he already has or will it be a substitute for some of his current tablets / medication?

What other implications will this have in terms of testing (he doesn’t currently test / told he didn’t need to) and any other changes in lifestyle / diet / exercise (or lack of!) / day to day things.

Feel I need to take control of the situation to some extent as know that he won’t –any advice you can give so that I feel more prepared would be appreciated, thanks.

Type 2 diabetic ; controlled (not controlled!) by medication, see other post “Living with a partner with uncontrolled type 2 diabetes”

There comes a time when the choices run out.
He might have been told that he need not test and it sounds like that was exactly what he wanted to hear because it was WRONG! WRONG! WRONG! He should have tested, that way you don't go a whole year and end up being told that you're going on to insulin when you will definitely have to TEST! TEST! TEST!, a lot more than he should have done up to now.
My suggestion would be and I have to say right now that I'm not a doctor but I am a type II diabetic who has controlled my diabetes better by diet change. I've said this elsewhere bu there's no harm in me saying it again. I was taking Gliclazide, Januvia as well as statins for cholesterol (right pain in the legs they were). The GP was discussing moving on to insulin like it was a natural progression and I wasn't particularly bothered. Diabetes is in the family after all. The I decided to stop eating bread/pasta/rice/potato because I was seriously trying to lose some weight. My BG came down (I TEST TEST TEST) and my cholesterol dropped. Now I do not take Gliclazide, Januvia or Atorvastatin. I'm still on Metformin but who knows?
So although I suggested that the choices are running out, they haven't. The way forward is clear.
Start testing, the nurse is wrong and I'm almost inclined to say irresponsible to suggest testing isn't required. Not testing is how he got where he is.
Drop the carbs, it will change his life for ever and for the better.
That would be what I think is a sensible choice, the alternative is keep going as he is and have to take insulin and if he doesn't want insulin then I think an early slow lingering demise is probable with all the complications of high BG including amputations.
I appreciate your sentiment that you need to take control but I have a much better idea, I suggest HE TAKES CONTROL.
I apologise if I sound nasty, but he needs to wake up and smell the coffee, as they say, somewhere. It's hopefully not too late to make sensible changes and avoid insulin and avoid losing bits of the body.

 

[Molly56]

He might have been told that he need not test and it sounds like that was exactly what he wanted to hear because it was WRONG! He should have tested, that way you don't go a whole year and end up being told that you're going on to insulin when you will definitely have to TEST! TEST! TEST!, a lot more than he should have done up to now.

Drop the carbs, it will change his life for ever and for the better.That would be what I think is a sensible choice, the alternative is keep going as he is and have to take insulin and if he doesn't want insulin then I think an early slow lingering demise is probable with all the complications of high BG including amputations.

I appreciate your sentiment that you need to take control but I have a much better idea, I suggest HE TAKES CONTROL.
I apologise if I sound nasty, but he needs to wake up and smell the coffee, as they say, somewhere. It's hopefully not too late to make sensible changes and avoid insulin and avoid losing bits of the body.

You are right, he does need to take control and do something about it but sadly I cannot see that happening based on current circumstances / experience.

Will have to wait and see what tomorrow brings (or today as I finish typing this!) and then formulate a plan to go forward.

Hopefully things won't be as bad as I predict but then again perhaps it will be the wake up call that he needs.....I know that sounds harsh to some people but think that it will take something pretty drastic to change the habits of a lifetime.

It's difficult to know what I can do / say at the appointment as I am not the patient....I do have a lot of questions but will have to see how I can drop them into the conversation without being seen to take over.

I understand that testing is really what is required but as you said "He might have been told that he need not test and it sounds like that was exactly what he wanted to hear" .....perhaps as you also say testing will become a necessity if he is moved onto insulin which in the short term may not be a bad move.

On a positive note I have gained a lot of info and advice from the website and reading the forum so I know there are other ways of tackling this and maybe there are things I can do in the future to help....am going to clear the cupboards out of carbs at the weekend

 

[Nyxks]

@Molly56 Ill say this before all else, good for you for trying to be pro active - however, the reality is only he can do it for himself and if he won't help himself there is nothing you will be able to do other then tick him off to no end if its something he's dead set against (or he'll come to resent you on one to many levels, or see you as the one who caused all his issues in either case your the one who gets blamed and he never takes it).

My mom has been a diet controlled t2 for almost 40 years (she's now 80) with an a1c now of 4.5 (non diabetic levels) but it wasn't always like that though she's always been diet controlled never on medication or insulin the first 3 years of life with her as a child was hockey sticks on so many levels, she went from being angry at my dad to blaming him for her being diabetic and even me, she calmed down in time but for that little time it was a roller coaster of emotional stress and learning. As a child hearing my mom crying and my dad not knowing how to handle her was very upsetting and bewildering to say the least since no one told me what was going on (or why all of a sudden all the "junk food" in the house was no longer allowed in the house, or why I wasn't allowed cookies, cake, candy or anything while in the house - that didn't end well when I left to live on my own unfortunately).

Years later (a decade and change) I'd get told that I'm also Diabetic but instead of being like my mom insulin was the only option I have and I didn't won't to listen I said NO i said FORGET IT and other junk my endrocronogist said a educational class would do be no good and he was right at the time it wouldn't have I wasn't in the right frame of mind to listen all I could think of was INSULIN = NEEDLES = NO WAY … I begged and demanded other treatment and got it but was told it wouldn't help that my body wouldn't give me the choice. I still wonted to try and so he let me do what I demanded after a bit and getting out of the issues I'd gottten myself into (finding medial help of another nature that I really needed to get my head on straight) I said your right I need the insulin, but it took me coming to the facts on my own and facing the facts that it was necessary (that and falling in love added to the drive to take care of myself) if I wonted to live and avoid complications beyond any damaged I'd already dun to myself.

I'd dun the damage by then, my levels had been running around 18 to 25 (I'd only tested maybe a couple times a month or so as I got the courage to stick myself - something I still struggle with 11 years later), I didn't get a lecture from him and I still didn't get a referral to a group I was just given the script and told to fill it at the pharmacy, it took me going to the library and looking online to learn how to give myself insulin and where to inject it (his only advice had been X amount before each meal and Y amount at night) which ended up being a lot of trial and painful errors. Years later I did ask why I never got the referral to a educational class like mom took, and he said that as angry as I was at the start I wouldn't have listened and by time I was ready I'd already educated myself that he didn't feel a class would be of help/use to me (though I disagree I can see his point on various levels).

What does this all boil down to? Simple, he might not be ready for the switch but insulin isn't the enemy its a life saver and there is always the possibility since he's type 2 that after getting control that he'll be able to come off of it (it can and does happen). To start they might keep him on pills depending on interactions.

Things you can ask for yourself and in his stead if he agrees are…
If Insulin….
How do I inject? (the get nurse/doc to show you how to do it)

Where do you suggest? (tummy is the most common and best, but this, back of upper arms, etc are not uncommon)

Pens, Cartridges or Vial? (this mean what way the insulin is contained in a pre-filled pen, pre filled cart rage that needs to be put into a refillable pen or a vial which means you need to get the needles to go with it, not as convent as Pens or Cartridges).

Dosage fixed amount at each meal? flex according to carb to insulin ratio? (fixed means you take like X units with a meal regardless of how many carbs the meal has which can either see levels doing down or nothing depending on how carb heavy the meal is - the flex is harder and not common for starters since it means you have to do a lot of trail and error to learn your carb to insulin ratio something that your nurse would have to help with over the course of weeks/months.

How many Carbs Per Meal and How Many Carbs Per Snack - plus how many snacks per day (two or three type deal) as well as total Min Carbs for the day and Max recommended for the day (150 grams a day total is a base for that some work off of but isn't right for everyone)

Other Qs you can ask about are local support groups that you both might join together to learn about D together and to get him around other diabetics and hear their stories and experiences plus get any education that might be offered during though meetings (depends on the groups, some have a theme each meet, like cookings, insulin dosage, sexual disfunction, etc.)

One thing about insulin is that if he already has weight issues, you might find that he will gain weight on the insulin, its not uncommon side effect since the body is now getting the fuel it needs but without the work outs to make use of the fuel it just turns to fat and sits there (so getting active if he's not already is highly recommended - under his medical personals supervision as necessary).

If he is put on insulin you might be able to find the book Think Like a Pancreas its a bit technical, but it might give you insight into how the insulin helps/works and who knows he might be willing to read it - you should be able to get it from the library is the hospital doesn't have it in their loan collection.

http://cks.nice.org.uk/insulin-therapy-in-type-2-diabetes might be of help to you if your in the UK it might also answer some of your Qs (not sure its not viewable outside of the UK)

Good luck!

 

[Indy51]

Maybe going on insulin will turn out to be the wake up call he needs? I hope so for his sake.

One thing I'd add is that if people are continually running high BG their cognitive function is bound to be impaired, so maybe if he gains control of his BG via insulin, he'll become more rational about things? That would be my hope if I were in your shoes.

I have a friend who sounds very similar to your partner and I've given up even trying to educate him because he really doesn't want to know. There is only so much thinking and worrying you can do on someone else's behalf - if they're not willing to make the effort themselves, there's really not much choice but to leave them to it and preserve your own health and sanity. You can't live other people's lives for them.

 

[Molly56]

Off to see the diabetic nurse shortly....will be back later, no doubt with a list of questions!

 

[graj0]

.....perhaps as you also say testing will become a necessity if he is moved onto insulin which in the short term may not be a bad move.

With respect, there is no perhaps, insulin means testing, testing, testing. By reading the messages on this forum and similar forums you will find a lot of diabetics who react differently to different carbohydrate. Testing is essential.
I hope it went well today, for you both.
I hope I wasn't too ferocious, my father was sort of in denial about his diabetes for many years although he did make some efforts in avoiding sugary things. He should really have been watching his carbs as well. Now he's on insulin which is a complete nightmare for him because he faints when you say the word needle, never mind actually inject himself. He's also lost a toe and that was down to his stubbornness and not doing the right thing at the right time. He was lucky not to lose the foot or worse. Sadly, I ran out of patience, I am under no delusions that things will just be OK, I have to make them OK and do whatever has to be done, in my case avoiding the carbs.

 

[Molly56]

Just a quick update and a few questions following our appointment this morning…..

As expected blood test results were high (10mm, previously 10.3mm in January), which I think equates to HbA1c 64mm or HbA1c 8%....I guess it could have been a lot worse though.

As a result the nurse has changed his medication, dropping the Linagliptin (evidently this had not had any effect on reducing bg levels in the six months he had been taking it ) but increasing the Gliclazide (currently on 2 x 80mg) to 2 tablets twice a day = 4 x 80mg….I understand this is the maximum dosage (320mg) for this one now.

A possible side effect of this change is the risk of hypos so the nurse provided him with a blood test monitor and advised that he would need to test his bg levels before driving…..so the good news is that we now have the facilities to test!!!

The not so good news is that I doubt very much that will happen…..he still doesn’t get it and don’t think he was really listening to what she said…..the word ‘stubborn’ springs to mind

From reading up on this website / forum I also picked up that legally he should inform his car insurance company that he is taking this medication (gliclazide) but know that he will not do this – I did mention it to him but he just dismissed it as unnecessary......you can see I have a battle on my hands!
My car insurance is up for renewal at the end of the month so am removing him as a named driver on my policy to protect myself – he doesn’t need to drive my car so best he doesn’t - had decided this before today but today just confirms it.

The good news I guess is that we are still a step away from going on to insulin but I expect it will very much depend on what happens with the increase in Gliclazide over the next three months. Am expecting there to be some tricky bits…..

Has anyone any experience of being on the maximum dosage of Metformin (2000mg) plus the maximum dosage of Gliclazide (320mg)

…..did it manage to bring bg levels down to an acceptable level

…..are there any particular problems / pitfalls that I should look out for

I am a bit worried about the hypos especially if he refuses to test before driving but don't see what I can do about it when I am not here / out at work during the day.

Thanks for all your advice so far.

 

[this is too difficult]

Tell him to read this post.
You are a very lucky man to have someone who cares so much about you.
And I am a grumpy old man.

 

[Molly56]

I hope it went well today, for you both.
I hope I wasn't too ferocious, my father was sort of in denial about his diabetes for many years although he did make some efforts in avoiding sugary things. He should really have been watching his carbs as well..

Like your father my partner has been making an effort to avoid sugary things recently as he sees this as the enemy in T2 diabetes - unfortunately this is a common misconception as the carbs are also clearly to blame. Am slowly trying to educate him on this and feed him / encourage the right foods where I can.

Have posted details of the outcomes of our appointment (see above) and hope that armed with the knowledge of where we are and where we need to get to I can help to steer him along the right path.

At times I, like you, do run out of patience which I guess is understandable. There was a time a few months ago when I kept on telling myself "it is not my problem" and tried to distance myself / mentally walk away from the situation but that is hard when you care for someone.

Am currently in a pro-active mood to try and help but don't know how long that will last.

 

[Molly56]

Tell him to read this post.
You are a very lucky man to have someone who cares so much about you.
And I am a grumpy old man.

Unfortunately I don't think he notices or realises what I am doing to try and help; he does occassionally but on the whole my efforts go unnoticed.

Why, may I ask, are you a grumpy old man?......your comment intrigues me.

 

[Anie]

I know you care about him, but is really don't know where you get the patience from!

What I put do you have in relation to his diet? This may be a starting point, if you don't buy the food he shouldn't eat, will he go out and buy it and cook it?

In relation to driving I would suggest that if he doesn't test before driving that he will probably invalidate his insurance. Also, if he drives, has a hypo and kills someone how is he going to feel? If he kills himself then how are you going to feel? It then raises the question does he really care about you like you do about him because people who care about other people don't treat their love ones like this. Also, are you going to get in the car with him driving if he hasn't tested???

Sorry to sound brutal, but there are questions you need to know the answers to.

 

[Molly56]

I know you care about him, but is really don't know where you get the patience from!

I would suggest that if he doesn't test before driving that he will probably invalidate his insurance. Also, if he drives, has a hypo and kills someone how is he going to feel? If he kills himself then how are you going to feel? It then raises the question does he really care about you like you do about him because people who care about other people don't treat their love ones like this. Also, are you going to get in the car with him driving if he hasn't tested???

Sorry to sound brutal, but there are questions you need to know the answers to.

I agree with all that you have said and have asked myself all the same questions.

Can answer the last one in that I always drive when we go out together....as for the others I will have to address those somehow but not sure how

 

[Molly56]

What I put do you have in relation to his diet? This may be a starting point, if you don't buy the food he shouldn't eat, will he go out and buy it and cook it?

Sorry, missed this part of your post

In relation to food I do try where possible to buy the food that he should eat and am gradually altering what we eat based on what I am learning from the website / forum.

However I cannot be held responsible for what he chooses to eat whilst I am out at work during the day.

Being retired he tends to get up late and generally skips breakfast. Have stressed the importance of eating breakfast but he hasn't listened / is stuck in his ways - think this will be more critical now after recent change in medication. He then tends to go to local supermarket / cafe for lunch and to get the papers / shopping when needed.

Am trying to lead by example by cutting down on desserts / cakes / biscuits (good for my health / weight control so not a real sacrifice) but if he buys these when I am not around I can't be held responsible for his actions.

 

[catherinecherub]

Hi Molly,

Your husband sounds as though he is not prepared to take any responsibility for his diabetes and has passed the management over to you. You are not his mother, he is not a child and he should not put you in this position.

See if he will watch this video with you, it might be the wake up call that he needs. It is about two sons trying to change the mindset of their father who has type2.

https://www.kickstarter.com/projects/fixingdad/fixing-dad-a-feature-documentary-film

 

[Anie]

Molly, you are doing what you can. No you can't keep tabs on him all the time, especially when you are out at work etc. but he needs to take responsibility, if, despite your best efforts he doesn't want to, then there is nothing you can do. Good luck

 

[ladybird64]

Molly, Just a shortish post from me, I can see you have been given excellent advice. Let me come at this situation from the position of a "friend" I know.

My "friend" has a partner, T2, who also refuses to heed that they have to change their ways. If complications, which are usually inevitable come, they HAVE to. My friend also has diabetes T2, but hers is completely controlled as she changed her diet, cut down on carbs and tested her bg's regularly, against her docs advice.

My "friend" has advised, has shown results on the bg meter, has shown partner how to check his (always in the high teens) and has explained, without patronising, that there will be mega problems to come. My friends partner is on the highest dose of metformin, takes Januvia and hasn't had a diabetes check for about 3 years. My friend watches as he shovels bread down with every meal because that is the habit of a lifetime, and does the same with chocolate and cake, because he "needs something sweet". There are ongoing skin conditions which can only be made worse by these consistently high bg levels, plus a heart attack a few years ago. Friend's partner also has only one kidney.

My friend loves her partner dearly and understand all the advice about helping someone to help themselves but as you rightly pointed out, it is hard when you care for someone. My friend came to a decision a while ago, especially as she has been extremely ill with a something major just recently.

She told her partner that she loved him very much but if or rather when the inevitable complications hit, she will not be pushing her partner around in his wheelchair, she will not be able nor willing to do the brutal physical care it takes to look after an amputee. Before any of the "brought it on themselves" brigade chime in, many of those who are out there are not getting the correct info nor tools to help them make the changes, such as advice and support re testing and lower carbing.

But for those who choose to ignore it, they should not expect their loved ones to pick up the slack when it all goes pear shaped. Maybe you should do the same Molly.

Good luck.

 

[Molly56]

My friend loves her partner dearly and understand all the advice about helping someone to help themselves but as you rightly pointed out, it is hard when you care for someone. My friend came to a decision a while ago, especially as she has been extremely ill with a something major just recently.

She told her partner that she loved him very much but if or rather when the inevitable complications hit, she will not be pushing her partner around in his wheelchair, she will not be able nor willing to do the brutal physical care it takes to look after an amputee. Before any of the "brought it on themselves" brigade chime in, many of those who are out there are not getting the correct info nor tools to help them make the changes, such as advice and support re testing and lower carbing.

But for those who choose to ignore it, they should not expect their loved ones to pick up the slack when it all goes pear shaped. Maybe you should do the same Molly.

Good luck.

Had already come to the same decision myself.............I know that sounds really harsh but it is definitely an option that I have considered.

Don't know if I would carry it through as would depend on the exact circumstances at the time and how I feel when I get to that point but sometimes you just have to think of number one in order to maintain your own sanity.