Mum with diabetes

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Suzysheep said:
That’s absolutely shocking! can you ring 111?
how are people getting emergency dr appointments on the day?
im sorry, it sounds like such a worry for you.
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111 is the same. Emergency dr appointments is same, present to A&E.
I dont want to get political but this is the sharp end of underfunded nhs.
As Dr's retire around the city this company takes on the patients as an outsourced deal from the NHS Trust.
All remaining gp not under this partnership have closed books to new patients .
 
My thoughts on this situation are as others have mentioned that she was potentially hyperglycemic and DKA. That is what it sounds like and if so, you were very lucky not to lose her.
If her pancreas is unable to produce enough insulin and it could be that her current insulin dose is not enough or perhaps the sore throat the night before was an infection which caused her liver to release more glucose to fight the infection but there was not enough insulin in her system to deal with it, then her levels could easily go into orbit and ketones develope. Ketones become toxic in the blood when BG levels are high (mid teens or above) causing DKA (DIabetic KetoAcidosis) and this can cause organ failure, coma and even death if more insulin is not administered to bring levels down. Depending upon the type of insulin she uses, it may not be suitable to give her an extra shot to bring levels down, so we would recommend urgent A&E attendance in that situation if it is DKA.

The first thing to do in a situation like that again (fingers crossed it never happens), be it yourselves, your sister or your Dad, is to test her BG levels, straight away, so you know what you are dealing with. High BG in the 20s or above when she is ill like that means you need assistance. I can understand her reticence if she had such a bad experience last time but I really don't think she is being fair to your Dad to refuse. Also, I am sure she would be less adamant about it if it were paramedics telling her she needed urgent treatment.

I also wonder about her diabetes diagnosis. You mention that she is Type 2 diabetic, but I wonder if that may be wrong.... many of us have been misdiagnosed Type 2 here on the forum. The desperate need for the toilet and losing control suggests to me that she might possibly be Type 3c rather than Type 2. Has she ever had gall bladder issues, perhaps gall stones or pancreatitis?

The talk of her BG levels being monitored remotely sounds like poppycock to me and I wonder if she has been misinformed or misunderstood. Even those of us who are Type 1 and use Libre which we download to enable our diabetes clinic to access do not kid ourselves that anyone actually looks at the info unless we have a problem and approach them for help. Then they will look at it and help us devise a solution, but no one is sitting monitoring our results and getting an alarm when we go high or low, unless you have a special system for a child or vulnerable adult linked to another relative or carer. BG meters don't do that as far as I am aware and if she only tests once a day then there would be no great value in it anyway. BG levels can vary dramatically throughout the day and night, so a one off finger prick even just 2 hours ago tells you almost nothing about what is happening "NOW"

It would be worth getting a free 2 week trial of Libre for your Mam to get a better idea of what is actually going on and so that your Dad could scan if your Mam was taken poorly again. It isn't a fool proof system but would give a better idea of how her diabetes treatment is working (or not) and perhaps enable you to push for a review of her treatment. Unfortunately with the NHS at the moment, you have to be prepared to be politely and persistently pushy to get the support and treatment you need. It is a lot cheaper for them to treat you at home that for you to be an emergency admission so it is worth emphasizing that she reached a level where she should have gone to hospital. I hear what you are saying about your GP services and the hospital doesn't sound much better but she sounds like she needs more support. Either she needs to take more care herself and test more often or accept Libre (yes it really is that expensive) but definitely worth taking the opportunity of the free trial for a couple of weeks.

Sending ((((HUGS))) because your account of the situation reminds me so much of my own mother and her difficulties with pancreatic problems and I look back now and so wish I had known then what I now now, as I would have been able to ask all the difficult questions and push for tests and answers and treatment that perhaps would have improved her quality of life in her later years and maybe enabled her to live a more comfortable and longer life.
 
lizhill said:
And if too high?
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If she’s only on insulin once a day she can’t do anything immediate about highs. If over about 14 or feeling unwell then check for ketones if able, she should be able to get urine ketone sticks prescribed. High bg with high ketones is an emergency.
 
rebrascora said:
My thoughts on this situation are as others have mentioned that she was potentially hyperglycemic and DKA. That is what it sounds like and if so, you were very lucky not to lose her.
If her pancreas is unable to produce enough insulin and it could be that her current insulin dose is not enough or perhaps the sore throat the night before was an infection which caused her liver to release more glucose to fight the infection but there was not enough insulin in her system to deal with it, then her levels could easily go into orbit and ketones develope. Ketones become toxic in the blood when BG levels are high (mid teens or above) causing DKA (DIabetic KetoAcidosis) and this can cause organ failure, coma and even death if more insulin is not administered to bring levels down. Depending upon the type of insulin she uses, it may not be suitable to give her an extra shot to bring levels down, so we would recommend urgent A&E attendance in that situation if it is DKA.

The first thing to do in a situation like that again (fingers crossed it never happens), be it yourselves, your sister or your Dad, is to test her BG levels, straight away, so you know what you are dealing with. High BG in the 20s or above when she is ill like that means you need assistance. I can understand her reticence if she had such a bad experience last time but I really don't think she is being fair to your Dad to refuse. Also, I am sure she would be less adamant about it if it were paramedics telling her she needed urgent treatment.

I also wonder about her diabetes diagnosis. You mention that she is Type 2 diabetic, but I wonder if that may be wrong.... many of us have been misdiagnosed Type 2 here on the forum. The desperate need for the toilet and losing control suggests to me that she might possibly be Type 3c rather than Type 2. Has she ever had gall bladder issues, perhaps gall stones or pancreatitis?

The talk of her BG levels being monitored remotely sounds like poppycock to me and I wonder if she has been misinformed or misunderstood. Even those of us who are Type 1 and use Libre which we download to enable our diabetes clinic to access do not kid ourselves that anyone actually looks at the info unless we have a problem and approach them for help. Then they will look at it and help us devise a solution, but no one is sitting monitoring our results and getting an alarm when we go high or low, unless you have a special system for a child or vulnerable adult linked to another relative or carer. BG meters don't do that as far as I am aware and if she only tests once a day then there would be no great value in it anyway. BG levels can vary dramatically throughout the day and night, so a one off finger prick even just 2 hours ago tells you almost nothing about what is happening "NOW"

It would be worth getting a free 2 week trial of Libre for your Mam to get a better idea of what is actually going on and so that your Dad could scan if your Mam was taken poorly again. It isn't a fool proof system but would give a better idea of how her diabetes treatment is working (or not) and perhaps enable you to push for a review of her treatment. Unfortunately with the NHS at the moment, you have to be prepared to be politely and persistently pushy to get the support and treatment you need. It is a lot cheaper for them to treat you at home that for you to be an emergency admission so it is worth emphasizing that she reached a level where she should have gone to hospital. I hear what you are saying about your GP services and the hospital doesn't sound much better but she sounds like she needs more support. Either she needs to take more care herself and test more often or accept Libre (yes it really is that expensive) but definitely worth taking the opportunity of the free trial for a couple of weeks.

Sending ((((HUGS))) because your account of the situation reminds me so much of my own mother and her difficulties with pancreatic problems and I look back now and so wish I had known then what I now now, as I would have been able to ask all the difficult questions and push for tests and answers and treatment that perhaps would have improved her quality of life in her later years and maybe enabled her to live a more comfortable and longer life.
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How interesting, its a yes to gall stones, had to have 2 sets removed years ago.
She is awake enough today to do a finger test and its reading 12 that's a full 48h after the episode. Dad managed to ask her what she'd been told to aim for and its between 5 and 15 which seems a huge range!
Her normal daily level is between 9 and 10. I do agree it looks like the infection has prompted some reaction, as I said the only other time this happened on discharge from hospital she was covid positive e coli positive and taking anti biotics she was allergic to for a uti. So many different things we could attribute it to. My sister said she only started getting more lucid when the proper uti drugs started being taken.
Once I can talk to her I think the thing I must impress on her is how these things can all be linked to her diabetes and so as a minimum she should rule that out first, and if a reading shows a significant change in bg she needs to do something about it.
I also think the monitoring is total BS BTW. I think we are over immediate danger thank goodness, I really couldn't get the image on my mum collapsed in the hall in her own urine and vomit out of my head and hoped that was not my last memory.
I am so relieved to be able to recall my situation and get some real practical advice, thanks to all who have contributed so far x
 
Lucyr said:
If she’s only on insulin once a day she can’t do anything immediate about highs. If over about 14 or feeling unwell then check for ketones if able, she should be able to get urine ketone sticks prescribed. High bg with high ketones is an emergency.
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I'll add urine ketone sticks to the list
 
lizhill said:
I'll add urine ketone sticks to the list
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I'm glad she is feeling a bit better, when people are unwell sometimes they themselves don't appreciate the seriousness of the situation.
Her high blood glucose will make her more prone to UTIs and they can cause very disorientating behaviour and even hallucinations.
The levels suggested to her do seem rather high for comfort, most Type 2 diabetics are aiming at 4-7 mmol/l fasting or before meals and no more than 8.5mmol/l 2 hours post meal but there may be circumstances in her case that she has been told something different.
It sounds as if she has had little support to manage her condition. Is she normally active and in reasonable health as it would be a shame that her quality of life is compromised by the poor care.
 
Leadinglights said:
I'm glad she is feeling a bit better, when people are unwell sometimes they themselves don't appreciate the seriousness of the situation.
Her high blood glucose will make her more prone to UTIs and they can cause very disorientating behaviour and even hallucinations.
The levels suggested to her do seem rather high for comfort, most Type 2 diabetics are aiming at 4-7 mmol/l fasting or before meals and no more than 8.5mmol/l 2 hours post meal but there may be circumstances in her case that she has been told something different.
It sounds as if she has had little support to manage her condition. Is she normally active and in reasonable health as it would be a shame that her quality of life is compromised by the poor care.
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Mum is socially active but in a sedentary way! She gets out the house, sees friends etc but isn't active and drives everywhere.
Things have deteriorated quite a bit in the last 2 years.
 
lizhill said:
Mum is socially active but in a sedentary way! She gets out the house, sees friends etc but isn't active and drives everywhere.
Things have deteriorated quite a bit in the last 2 years.
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That is good that she gets out and about, but worrying that you say she drives everywhere as there a certain rules about testing blood glucose before driving when on insulin, I wonder if she is aware of that. I assume she has informed the DVLA that she is on insulin though if she is 70 she would have had to renew her licence then, was she on insulin at that time.
 
A fingerprick blood glucose monitor is absolutely NOT rocket science to operate, and either you, your dad or someone else could have tested her if she wasn't able to herself. It only hurts if the pad of the finger is pricked or the front, instead of the side of the tip or if some vicious bugger then squeezes the blood out violently instead of 'milking' it by stroking the same side firmly but gently, from below the top knuckle upwards until a drop of blood appears. Then take the meter with the strip already inserted and the meter saying it's ready to test, to the drop of blood rather than the other way about.

But! - of course you'd need to know where her meter is .....
 
11what a very distressing and worrying situation. I have two possible suggestions to make.

Firstly, does any hospital in her relative vicinity have a non-A&E clinic where one can walk in? My local hospital has one, (I think it's called an urgent treatment unit) and basically it is a 'bridge' between A&E (which the hospital no longer has, got closed down and moved to a further away hospital) and a GP surgery. Appointments are usually made via 111,as in, the 111 nurse/doctor makes the appointment for you to go along (this is for those who can't get a GP appointment for a pressing situation which the 111 person thinks needs clinically checking). However, mine also allows walk-ins - though you walk in, register, say what's wrong, and then they give you an appointment, hopefully that day/evening, but you may have to come back in an hour or so. The good thing is you do get seen by a nurse/nurse practitioner/doctor, who will assess you, hopefully treat you, or get you hospitalised if necessary. It's not like A&E, and pretty 'civilised' if that's the right term.

My second suggestion is dependent on your financial situation. Can you afford private medicine at all? My local private hospital has a GP service, and there are several private GP practices around. They are not cheap (the cheapest I've found is something like £70 for a twenty-minute appointment) and they can be busy too (eg, not the same day, but probably the day or so after). They may do home visits as well (for extra money!)

It may give a 'doorway' into the NHS as in, the private GP will assess, diagnose, and then you can know whether yes, hospital admission is necessary, or further treatment etc.

From what you've described about your mother's location, the NHS GP surgery service sounds in collapse. Grimly ,this is becoming more common.

As for your mum's refusal to cooperate ('in denial' by the sounds of things) this is very common in the ill and elderly alas, and is desperately frustrating for the family. It will be, in the end, I suspect, a balence between her right to refuse medical attention, and some form of 'safeguarding' or 'duty of care' for someone who cannot make rational decisions about their own wellbeing. But it is definitely 'difficult'.

Finally, calling an ambulance - if the operators deem it necessary to send one out - may take 'forever' these days, and she may still refuse to be hospitalised, even if they urge it, but their medical expertise will at least give you some starting point as to what is wrong, and how severe it is.

I wish you all the best that is possible in so worrying a situation.

(A difficult question - but do you think your mother is beginning to find rational decisions and thinking difficult? Could dementia be starting to set in? Horrible to think of, but we all do need to consider the possibility in the elderly...)
 
Hi all, update from the last couple of days really and the next plan!
So by Wednesday day mum was feeling completely well again and showing no lasting effect of Sundays incident.
I had a video call with her and if I hadn't seen it with my own eyes I wouldn't have known anything had happened. She had been to her regular hairdressers and jails appointment that morning, was dressed, about tk go supermarket shopping on completely lucid. I was able to ask how much she was aware of and she knows she has no mobility and can't find the right words fir what she wants to say, but was unaware of the gibberish or irrational fixation on certain things (she was fixated with some grip spots on the top of a step stool for example). She accused me of being melodramatic so she clearly isn't aware how awful it looked, and trust me im very much NOT one for any drama in normal life. I play things down constantly.
I had to tell her that I genuinely thought that she wasn't getting through the night.

In the background leading up to being able to speak to Mum I was trying my best to find medical professionals to talk to. I succeeded with having my account of the events added to her record, however I'm not sure that will get looked at really, given in the December episode they prescribed 3x an antibiotic she was allergic to ‍♀️. They were obviously unable to comment back to me due to confidentiality. They have emailed me a consent form, but mum won't sign it. I urged her to say, then I can take up the ongoing fight to get the right care and attention but do far she's not happy with that.
She has agreed that she will raise this with the diabetic nursing team. She has a number for them separate to the call centre number handling gp requests.
She said they live in the same building as where she gets her eye injections (macular degeneration) and she went there yesterday so I'm hoping she has got herself an appointment. Ill check at the weekend when I'm not at work.
If the diabetes nurse team say those symptoms are not related to her diabetes then my next step will be to push for a full drugs review to try and see if this could be the cause.
Mum and I both agree this appears to ve a severe reaction to a virus or infection. In December she had 3 though UTI and hospital acquired covid and e coli, with so much wrong it was hard to link it to anything.
This time no UTI, no covid (3 negative tests) and on Friday just complaining of a sore throat.

I cannot thank all of you enough for helping me get some clear thinking and creating a logical plan to try and address what had happened. I will probably loiter with interest to try and absorb information that empowers me a bit more.
 
Great to hear that she is back to her usual self again, and especially to have bounced back so quickly.

The only thing that strikes me from the further detail you have given is the being fixated with something trivial which is often a symptom of low BG (hypo) rather than the high/DKA we initially thought, although I don't personally have experience of DKA thank goodness to be certain of that but not something I have seen mentioned. With hypos (low BG) it is a very common symptom as the brain runs low on glucose and struggles to process info, so it gets stuck in a particular thought process. That would also tie in with being cold and shivery.... essentially the body going into shock and shutting down. Of course, without a BG reading at that time, we can only speculate.

I wonder which insulin your Mam uses. I know there are cases where Lantus/Glargine, which crystalized after injection, has then got trapped in the body tissue and not slowly dissolved and released as it should but then suddenly releasing unexpectedly days, weeks or even possibly months later to produce a sudden and dramatic hypo, so it would be interesting to know which insulin she uses. It is not common for that to happen, but we have members here on the forum who have experienced that with Lantus/Glargine/Abasaglar insulin, so something else to consider as a cause.
 
I'll try and find out the insulin type. She mentioned its considered a very low dose and only once a day but I realise that's only subjective, and her default is to play everything down.
 
Actually there is another snippet of info I got that may be a clue. When she was hospitalised in December for the bleeding stomach ulcers the nurses on her ward were checking bg alongside other stats multiple times a day. They called in a diabetic nurse to take a look and talk to mum, because her readings were fluctuating a lot in the day, despite being on a specific diet and bed ridden.
The diabetic nurse then said she wasn't that worried and thats where mum got the 5 to 15 range from. Outside of that should ring alarm bells.
Also noting that Wednesday back to "normal" day her bg was 8. She had told me 10.2 Sunday and 12.8 Tuesday. No reading taken on Monday.
 
BG levels vary significantly day and night in response to a huge number of factors. This happens with none diabetic people to a lesser extent but with diabetes the spikes will usually be higher and depending upon the medication, but particularly with insulin, the drops can be faster and lower than normal.

There are something like 42 factors which affect BG levels. Food, medication and exercise being the main players, but lots of other stuff including illness, stress, alcohol, ambient temperature, seasonal changes, hormones. My BG levels used to spike up to 15 and drop back down to about 5 every morning after breakfast within an hour an a half of eating, until I learned how to use my insulins effectively and timed them correctly. If your Mam is only testing once a day, that really tells her nothing.
As was mentioned by someone else, if she is driving herself, then she is breaking the law by not testing before she drives and every 2 hours thereafter if she is using insulin. She also should have informed DVLA and be on a short term 3 year medical licence. All of us suing insulin need to do this. It doesn;'t prevent us from driving, but it keeps us and other road users safe and it is the law. Her insurance will be invalid if she is not following guidance on driving with insulin usage. You are clearly now aware of how quickly our ability to function can deteriorate with diabetes and insulin and that is why testing regularly is so important. It can and does occasionally happen when people are driving and it can have very serious consequences, so carrying your test kit and hypo treatment with you wherever you go is vital and testing before you get behind the wheel AND any time you don't feel quite right. Certainly long before you get to the stage of becoming immobile. This is really important at home but even more so when you are driving and she is breaking the law if she is not already doing this but more importantly, she is risking her own life and that of others by not complying.

I certainly would not want to stop your mother from driving or myself or anyone else for that matter. It is an integral part of my independence so I know how important it is but we have to comply with the law and ignorance is no defense. She needs to get this sorted if she drives and hasn't complied with the legislation until now. It is our responsibility to take the necessary steps to keep ourselves and others as safe as possible when we use insulin and drive. Cars can be lethal weapons. Please ensure that she is aware of this if she is not currently complying.
 
I know this may be a bit off the wall but I wonder from some of the symptoms you describe if it could have been a TIA (transient ischemic attack), mini stroke as it is sometimes called.
The more you can learn about her diabetes the easier it will be for you to recognise when things are going awry
 
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