Where to turn for help?

[MissElizabeth]

My 81 year old partner is a T2 diabetic. He also has liver cirrhosis.

For a while he's been doing OK managing both conditions - or so I thought.
Because I allowed him the 'autonomy' he insisted on, and because he was to all intents and purposes fairly stable, I stopped 'monitoring' him.

Behind my back he has been eating too much of the wrong type of food (including a huge slice of coffee cake which I was given and which I hid and he found).

To cut a long story short, his blood sugar a couple of weeks ago was 23.0 and, on checking the history on his sensor reader, I can see that it has been up in the 20s for a few weeks - plummeting down again in the morning to between 6-9, and then going up again to 16 or 17.

Since then, he has become confused, lethargic, forgetful, agitated, and he also has lost muscle strength - in fact he is very weak, and has tremors in his hands.

Last week I called 111 and they sent out paramedics who checked all his vital signs (which were OK), asked him a couple of questions (to test his cognitive function), called the local surgery who saw him the next morning and sent him off with a prescription for anti-biotics because he complained of peeing often (he's on diuretics, so obviously, he would).

We have had no contact with the diabetic nurse for months - he's not being 'medically' monitored in any way and I feel he's been abandoned - and I'm left to deal with it and I don't know what to do because he's deteriorating by the day! I don't want to call 111 again and go through the same procedure with them saying "he's fine, just make sure he drinks plenty of water".

As his carer, I also have complex medical 'issues' and I'm at my wit's end and don't know where to turn - I don't want to just leave it to see 'what happens' - he could end up in a coma, or have a stroke or heart attack. Yet I don't want to call 999 because it's not an immediate life-threatening emergency.

Can anyone advise me where to start, or what to do next?

 

[s'nic]

Behind my back he has been eating too much of the wrong type of food

This is potentially an ongoing problem which could impact his health, and cause you huge amounts of stress which will impact your health.
The simplest solution to this is to try avoid buying foods he is likely to eat secretly. This may also impact foods in the house you want to eat, but I think overall less stress on you and less health risks to him will have a huge benefit.

Have you spoken to a doctor about the ongoing problems? You could contact your doctors surgery and make an appointment to discuss all your concerns (making a brief list of key questions to ask to ensure you cover all concerns will help).

Do you know what his last HbA1c reading was, and roughly how long ago that was done?

 

[Leadinglights]

My 81 year old partner is a T2 diabetic. He also has liver cirrhosis.

For a while he's been doing OK managing both conditions - or so I thought.
Because I allowed him the 'autonomy' he insisted on, and because he was to all intents and purposes fairly stable, I stopped 'monitoring' him.

Behind my back he has been eating too much of the wrong type of food (including a huge slice of coffee cake which I was given and which I hid and he found).

To cut a long story short, his blood sugar a couple of weeks ago was 23.0 and, on checking the history on his sensor reader, I can see that it has been up in the 20s for a few weeks - plummeting down again in the morning to between 6-9, and then going up again to 16 or 17.

Since then, he has become confused, lethargic, forgetful, agitated, and he also has lost muscle strength - in fact he is very weak, and has tremors in his hands.

Last week I called 111 and they sent out paramedics who checked all his vital signs (which were OK), asked him a couple of questions (to test his cognitive function), called the local surgery who saw him the next morning and sent him off with a prescription for anti-biotics because he complained of peeing often (he's on diuretics, so obviously, he would).

We have had no contact with the diabetic nurse for months - he's not being 'medically' monitored in any way and I feel he's been abandoned - and I'm left to deal with it and I don't know what to do because he's deteriorating by the day! I don't want to call 111 again and go through the same procedure with them saying "he's fine, just make sure he drinks plenty of water".

As his carer, I also have complex medical 'issues' and I'm at my wit's end and don't know where to turn - I don't want to just leave it to see 'what happens' - he could end up in a coma, or have a stroke or heart attack. Yet I don't want to call 999 because it's not an immediate life-threatening emergency.

Can anyone advise me where to start, or what to do next?

Welcome to the forum. It is a difficult position to be in but as you say it is out of concern for his deteriorating condition.
You mention he has a sensor so does that mean he is Type 1 and taking insulin or is he self funding the sensor.
It would help if you would clarify that and share what medications he is taking as how to deal with the situation will depend on that.
I would not hesitate to call 111 again if you are concerned. Elderly people are prone to UTIs and symptoms will be consistent with what you describe. If the medication is one which encourages the kidneys to work hard to excrete excess glucose which he would have if readings were in the 20ies then that is more likely to result in a UTI. The antibiotics should be helping as long as they are the correct ones.
If his glucose levels are high then having a means of testing for ketones would be a good idea, urine dip sticks can be got from a pharmacy as high glucose and high ketones can be dangerous and require immediate medical attention.

 

[MissElizabeth]

This is potentially an ongoing problem which could impact his health, and cause you huge amounts of stress which will impact your health.
The simplest solution to this is to try avoid buying foods he is likely to eat secretly. This may also impact foods in the house you want to eat, but I think overall less stress on you and less health risks to him will have a huge benefit.

Have you spoken to a doctor about the ongoing problems? You could contact your doctors surgery and make an appointment to discuss all your concerns (making a brief list of key questions to ask to ensure you cover all concerns will help).

Do you know what his last HbA1c reading was, and roughly how long ago that was done?

Thank you for your response.
His last HbA1c was, roughly, about 4/5 months ago and was 51 which the nurse was fairly satisfied with. I think he rested on his laurels, and the nurse has made no contact since, where previously, she would call us about every 3 weeks just for a quick check-up.
I plan to contact his doctor - the surgery is not open at weekends. In fact I did last week for an emergency telephone consultation, but a recorded message told that all the emergency appointments had been taken and in an emergency to call 111 or 999... which is why I ended up calling 111.
When I had my own 'emergency' I wrote a brief note and got a friend to take it down to the surgery (I am housebound) - and I had a response within hours of a doctor reading the note. And this is what I plan to do on Monday, as it is almost impossible to get through (especially on a Monday) - and when you do, all the emergency bookings are taken!
Yes, I shall certainly keep 'goodies' out of the house!

 

[MissElizabeth]

Welcome to the forum. It is a difficult position to be in but as you say it is out of concern for his deteriorating condition.
You mention he has a sensor so does that mean he is Type 1 and taking insulin or is he self funding the sensor.
It would help if you would clarify that and share what medications he is taking as how to deal with the situation will depend on that.
I would not hesitate to call 111 again if you are concerned. Elderly people are prone to UTIs and symptoms will be consistent with what you describe. If the medication is one which encourages the kidneys to work hard to excrete excess glucose which he would have if readings were in the 20ies then that is more likely to result in a UTI. The antibiotics should be helping as long as they are the correct ones.
If his glucose levels are high then having a means of testing for ketones would be a good idea, urine dip sticks can be got from a pharmacy as high glucose and high ketones can be dangerous and require immediate medical attention.

Thank you for replying!
He's a type 2 diabetic and we are self-funding the sensor.
The only medication he is on is Gliclazide 40mg and Spironolactone 100mg daily.
He's also on Rifaximin for the cirrhosis - for hepatic encephalopathy, so it's hard for me to know whether his mental state is a result of the liver cirrhosis or fluctuating blood sugar levels. I feel he needs evaluating to determine what's-causing-what, which is what I hoped would happen when I called 111. As his vital signs were OK, the paramedics deemed it pointless him being admitted.
What are the clinical / physical signs of ketosis? I cannot get down to the pharmacy for the dip sticks and have no friends or neighbours who will do this for me (my family live in SA).
But thanks, I'm beginning to see where I should be going with this now.

 

[s'nic]

You've heard it said, but it's often overlooked - You need to look after your health as a priority, it is that which enables you to look after him.

I'm glad you starting to see a way through this.
Please do all you can to reduce the stress and pressure on yourself. Even small changes (one at a time) might make your life easier or less stressful. When added together small changes can make a big difference 🙂

I think a lot of doctors surgeries are the same, even trying to make an appointment stresses me out.

 

[rebrascora]

Hi and welcome.

So sorry to hear you are having a worrying time with your partner. Can you tell us a bit about how long he has been diagnosed and what medication he uses to manage his diabetes. An HbA1c of 51 is really very good particularly at his age and it is normal to only have a couple of check ups a year unless you are very newly diagnosed or have a significant change in treatment and then there would be a period following the change of more regular monitoring to assess how the new treatment is working, particularly if someone goes onto insulin. I am guessing that your partner is on insulin since he has a Libre sensor. If that is the case then to a certain extent he can eat what he wants as long as he adjusts his insulin to account for what he eats. Having his diet restricted or feeling like he has to be secretive may be part of the problem and if you allow him to bve more open but encourage him to adjust his insulin for what he wants, that may be more beneficial to both of you. My partner and I live separately and I mostly don't keep stuff in the house because I can't trust myself, but when I go to his place, I sometimes have a portion of a treat with him and because he is there I know I have to be disciplined.

Not ever having treats at the age of 80 seems rather sad as there are few pleasures left in life at that age I imagine, so I wonder if maybe he has a small portion of a treat with you and you not being judgemental about it might be better than him feeling that he needs to do it on the sly. Having a planned small sweet treat at the end of a meal can sometimes be managed better with insulin than having it between meals, particularly if you feel you need to be sneaky about it.

I know you want the best for him but one of the worst things with diabetes is someone else telling you what you can and cannot eat and making you feel guilty about what you choose to eat, so maybe try encouraging him to have a small bit of something after a meal and dosing insulin for it.... if I am right about him being on insulin.

I don't mean this post to be critical of you in anyway as I know you have his best interests at heart, but being restricted with your diet is really tough and if you feel someone else is imposing restrictions on you, it can push you to go the other way, so perhaps try to find some middle ground.

 

[rebrascora]

I see that whilst I was typing you have clarified his medication and he is not on insulin, just Gliclazide. Does he take that 2 or 3 times a day? If just twice then perhaps make sure that any small sweet treat is included in the meal where he takes his Glic.

It is also possible that if his levels have increased recently, he may need his medication adjusted. High BG levels mid teens or above can lead to urinary infection and that can cause confusion and erratic or difficult behaviour.

 

[MissElizabeth]

You've heard it said, but it's often overlooked - You need to look after your health as a priority, it is that which enables you to look after him.

..."You've heard it said, but it's often overlooked - You need to look after your health as a priority, it is that which enables you to look after him."
Yep! I keep saying it to myself - my health has been on the back-burner for some time now, but it's good to be reminded- thank you!

 

[MissElizabeth]

Hi and welcome.

So sorry to hear you are having a worrying time with your partner. Can you tell us a bit about how long he has been diagnosed and what medication he uses to manage his diabetes. An HbA1c of 51 is really very good particularly at his age and it is normal to only have a couple of check ups a year unless you are very newly diagnosed or have a significant change in treatment and then there would be a period following the change of more regular monitoring to assess how the new treatment is working, particularly if someone goes onto insulin. I am guessing that your partner is on insulin since he has a Libre sensor. If that is the case then to a certain extent he can eat what he wants as long as he adjusts his insulin to account for what he eats. Having his diet restricted or feeling like he has to be secretive may be part of the problem and if you allow him to bve more open but encourage him to adjust his insulin for what he wants, that may be more beneficial to both of you. My partner and I live separately and I mostly don't keep stuff in the house because I can't trust myself, but when I go to his place, I sometimes have a portion of a treat with him and because he is there I know I have to be disciplined.

Not ever having treats at the age of 80 seems rather sad as there are few pleasures left in life at that age I imagine, so I wonder if maybe he has a small portion of a treat with you and you not being judgemental about it might be better than him feeling that he needs to do it on the sly. Having a planned small sweet treat at the end of a meal can sometimes be managed better with insulin than having it between meals, particularly if you feel you need to be sneaky about it.

I know you want the best for him but one of the worst things with diabetes is someone else telling you what you can and cannot eat and making you feel guilty about what you choose to eat, so maybe try encouraging him to have a small bit of something after a meal and dosing insulin for it.... if I am right about him being on insulin.

I don't mean this post to be critical of you in anyway as I know you have his best interests at heart, but being restricted with your diet is really tough and if you feel someone else is imposing restrictions on you, it can push you to go the other way, so perhaps try to find some middle ground.

... oh, I don't take your post as critical at all, I'm grateful you've taken the trouble to respond!

In fact, my partner is not on insulin and is a type 2 diabetic - we are self-funding the Libre sensor as he absolutely hates finger pricking! The only medication is Gliclazide, and I'm beginning to think this needs to be reviewed.

As for the treats - we did have rules in place, but he broke them and will continue to do unless I hide the 'temptations'. It does seem unfair at his age - he's already successfully given up drinking alcohol because of liver cirrhosis (he was a 'functioning alcoholic'), so probably feels there's little pleasure left in life.

 

[MissElizabeth]

I see that whilst I was typing you have clarified his medication and he is not on insulin, just Gliclazide. Does he take that 2 or 3 times a day? If just twice then perhaps make sure that any small sweet treat is included in the meal where he takes his Glic.

It is also possible that if his levels have increased recently, he may need his medication adjusted. High BG levels mid teens or above can lead to urinary infection and that can cause confusion and erratic or difficult behaviour.

I'm beginning to think that his med needs adjusting, too. It's not been reviewed for some time. He's on the Glic x 2 per day, so that's something to check with the surgery - if I ever manage to get through to anyone!

In order to 'structure' his day somewhat, I asked him to tidy his office desk a bit - he's just spent hours cleaning and tidying. I asked him where he'd put all the paraphernalia that was cluttered around - he looked at me expressionless and said, "bit by bit it's disappearing, but I haven't a clue where I've put it all" and then just smiled... so he's not lost his sense of humour, at least!

 

[MissElizabeth]

Thank you everyone for your replies.

I've learned a little, and it helps just to unload a bit.

I know feel able to consider what to do next - which is what was really bothering me because I felt helpless and stressed.

And if I notice any serious deterioration I will call 111 again. Better to be safe than sorry.

I just felt so disappointed that he'd done so well previously, controlling his diabetes with diet, and giving up alcohol. But I now see that emotionally, one has got to have something to look forward to. Maybe a very small treat at the end of a meal with a coffee (which I've been told is OK) will prevent him from sneaking behind my back. There has to be something to fill the gap when you take something away.

 

[rebrascora]

Yes, I recently had to give up alcohol, not that I was drinking a lot or ever have but even one glass was making me ill the next day and I was using the alcohol as a crutch when I had had a bad day and was feeling stressed and anxious.
I was a sugar addict though pre-diagnosis so there have had to be some very major changes and it is really tough at 60 let alone 80, so sending (((HUGS))) to both of you. It does sound like he may need a review of his medication and perhaps he is craving sweet stuff because his body is no longer producing enough insulin to give him energy. The Gliclazide works by stimulating his beta cells which produce insulin to work harder but if they are failing, then it can cause them to essentially burn out and his levels to rise and he may now need to inject insulin, so do try to get an appointment. Some GP practices, you can do an online request for assistance. I have used it a few times and found it to be much less stressful and very efficient than trying to get an appointment by phoning.

 

[Leadinglights]

I wonder if by including a 'pudding ' as part of meals he would not be feeling deprived. If you like baking then there are some low carb recipes for puddings, cakes, biscuits on the website sugarfreelondoner.
Hopefully once the antibiotics kick in he will feel better.
You can buy ketone test urine strips from Amazon.
This is a link to the main DUK site which tells about the symptoms to look out for if there are high ketones.

What is DKA (diabetic ketoacidosis)?

Diabetic ketoacidosis, also known as DKA, is when there is severe lack of insulin in the body. This means the body can’t use sugar for energy, and starts to use fat instead.

www.diabetes.org.uk

 

[Docb]

@MissElizabeth Can I suggest that, if you have not done so already, you explore what carer support is available in your area. Google "carer support" and your "county council" and follow the trail to who provides support in your area. You should be able to self refer. Provision is a bit post code dependent with some CC's being far more supportive than others. At worst you should get a carers assessment which will help you to think things through with somebody who understands caring but at best you could get to meet with other people, yes there are a lot of us about in your position, to swap notes.

I tend to make a plea for a bit of pragmatism when it comes to reacting to diabetes in us wrinklies. In the end you have to get a balance between dealing with the diabetes and treating all the other things going on in a body that is beginning to creak generally. The suggestion made by others that you do not ignore yourself, is very wise. You need to work out ways to cope as early as you can.

 

[MissElizabeth]

Yes, I recently had to give up alcohol, not that I was drinking a lot or ever have but even one glass was making me ill the next day and I was using the alcohol as a crutch when I had had a bad day and was feeling stressed and anxious.
I was a sugar addict though pre-diagnosis so there have had to be some very major changes and it is really tough at 60 let alone 80, so sending (((HUGS))) to both of you. It does sound like he may need a review of his medication and perhaps he is craving sweet stuff because his body is no longer producing enough insulin to give him energy. The Gliclazide works by stimulating his beta cells which produce insulin to work harder but if they are failing, then it can cause them to essentially burn out and his levels to rise and he may now need to inject insulin, so do try to get an appointment. Some GP practices, you can do an online request for assistance. I have used it a few times and found it to be much less stressful and very efficient than trying to get an appointment by phoning.

Thank you for explaining about the Gliclazide - I definitely want his meds to be reviewed - I would also like him to have a blood test which might determine if he is deficient in any particular vitamin- like B12, which I know sometimes is the case with those who drink heavily.

It's knowing what is going on that makes it easier to deal with rather than floundering around trying to work out if it's this, or that, or whatever.

I used cigarettes once as a crutch so I completely understand why people need them (crutches, not necessarily cigarettes). He enjoyed his drink - which always happened at a particular part of the day - a ritual - and I think it's the ritual that he misses. Though I'm amazed that, having made the decision, he has never looked back.

Thank you for your kind reply and understanding.
Best wishes to you!

 

[everydayupsanddowns]

Some GP practices, you can do an online request for assistance. I have used it a few times and found it to be much less stressful and very efficient than trying to get an appointment by phoning.

Yes I’ve found this much better than playing 8am Phone Line Roulette too, but I guess it depends on if that service is available, and how comfortable one is with completing online forms.

Hope you are able to get a medication review @MissElizabeth and make some small adjustments to help steer his levels back into range, while also accommodating an occasional modest treat 🙂

 

[MissElizabeth]

Yes I’ve found this much better than playing 8am Phone Line Roulette too, but I guess it depends on if that service is available, and how comfortable one is with completing online forms.

Hope you are able to get a medication review @MissElizabeth and make some small adjustments to help steer his levels back into range, while also accommodating an occasional modest treat 🙂

Our surgery offers the online econsult - I tried it once and it 'timed-out' because I believe there is a maximum quota of requests that a given number of doctors can deal with in one day. Also, the service is only available during certain hours, then it is switched off, after which you have to either call or - if they are too busy, you will get a message to call 111 or 999.
I'd like to sit down in the evening when I can gather my thoughts and complete the form - but that is not possible.
I've resorted to writing brief notes which a friend delivers to reception and so far they have been happy with that!
He does need a review of his meds, most definitely and, because he's peeing an awful lot, he might have an electrolyte imbalance - or even a vitamin deficiency, so I shall politely ask for blood tests. He's showing signs of B12 deficiency (I recognise them as I suffered from B12 deficiency as I cannot absorb the vitamin and have to have injections).
Thanks for taking the time to respond. It helps!

 

[MissElizabeth]

Yes I’ve found this much better than playing 8am Phone Line Roulette too, but I guess it depends on if that service is available, and how comfortable one is with completing online forms.

Hope you are able to get a medication review @MissElizabeth and make some small adjustments to help steer his levels back into range, while also accommodating an occasional modest treat 🙂

... thank you - a med review is most definitely needed as he has not had one for over a year!
As for 'treats' - first he will have to understand what "modest" means - he's developed a heck of a "sweet tooth" since he gave up alcohol!

 

[rebrascora]

I am quite shocked that they are able to block the online access when they hit a quota or during certain hours. One of the reasons I find ours so good is, like you say, sitting down out of hours when you have plenty of time to compose your thoughts and complete the process and include all the info you feel is important. The first time I used it was to get my diabetes diagnosis and I think I completed the proforma on the Sunday night about 10pm and the GP emailed me back the Monday morning with an appointment time on the Tuesday afternoon with the nurse for a blood test and by the Thursday I had a diabetes diagnosis and was started on meds by the diabetes trained nurse. I never actually needed to see or speak to the doctor directly, but the system worked incredibly efficiently.
Such a shame you haven't had similar success with it but pleased you have an alternative means of contacting them. Hope your note works again this time.