Improving diet and lifestyle and reducing hypos and hypers

[ConcernedRelative]

I think I may need to try and consult with diabetic nurse and dietician, my father's problems with diabetes are untenable.

He's been cared for for years by our mother, but the roles have reversed now, and he's having to look after them. At first I was surprised at how well he managed, but his pain and moods and hypos and everything have started becoming a regular issue again. I think this morning was the second time in the last week that I found him on the floor, unable to get himself up, or even get the glucose he needed, until instructed. Thankfully no new breaks from the falls (he also has Osteoporosis and several other ailments, so there's lots of meds and issues that make eating certain things at certain times a challenge).

I'm hopeful there plenty of room for improvement , and lots of issues may relate to user education, on when to eat , check, and dose.

Using a reader with librelink2 so no real-time readings yet, but am going to try and look at a few days info to try and get the bigger picture.
Maybe I'm being naive, and it is as difficult as it seems (impossible?) to manage levels
Update: whilst speaking to LibreLink support about defective sensors I queried whether real-time scanning is possible whilst the reader is being used, and was told no, this isn't possible. Mother my be due a mobile upgrade so he could use her S10 as a reader (he hates technology, so no mobile)

I tried DiaBox again, and the sensor scan via NFC worked, triggering a high alarm, (10.2)

Asked dad to check with the reader device to compare, and the device now says unavailable
fixed by turning off bluetooth, suggesting you can't get real time info to app (librelink / diabox, on phone) and use the reader for scanning... which is a shame as the real-time info on diabox is pretty slick, even if the UI is a little overwhelming!)

- as they're both hard of hearing the alarms may be inaudible during nighttime
Does anyone have any recommendations on what levels to set high/low alarm thresholds at?
The health care professional adjusted on last visit (maybe over 6 months ago), and made the low lower, and the high higher (I forgot what reasoning was offered).


His breakfast routine is the only regimented meal (weetabix and fruit), but when this is eaten depends on when he awakes (mornings are a challenge, mainly due to pain, I think) and also I think the time in the "sweet spot" goldilocks target zone is low (he's supposed to be following the dafne system)

Nearly all meals are ready meals and therefore processed, which may be another challenge. Also he can't graze on nuts as he finds it difficult to even eat pasta or spaghetti al dente, due to dentures and sore wrists (also he has arthritis)

- He eats snacks late at night before bed to lift his BloodSugar, but this is usually an egg custard tart of a mcvites digestive chocolate bar

I could go on (and on) but not sure how helpful.
Also I've just found out sensor has expired (10 days) Early, again, so he thinks he has no sensor. thankfully I have a spare from last time this happened (less than a week ago)
So will also need to locate sensor Id to complete faulty form to notify manufacturer....

This happens a lot for him, could the sensor failure ("needs replacing " message) be caused also be a user issue?

To recap the current main issues are

- sensors keep failing
- readings nearly always high low (3 or 20+)
- highly irritable patient does not communicate problems, like sensor broke again
- dietary constraints
- lack of knowledge on what to eat, and/or willingness to do so

There's an article on getting data from androids I'm going to try to follow to access the data, potentially enabling us to share with the health care team (as well as the experts here, if that helps

Toying with the idea of putting all this on a trello project board. Will share info on events (alarms, meals, activity, insulins) when available.


I'm hoping science, patience, diligence, and kindness can help us out of this before my fears come true... any tips whatsoever most welcome. Apologies for being so verbose!

 

[Fairygodmother]

I’m not surprised you’re worried @ConcernedRelative.
It sounds as though your father’s not had to grasp the complexities of dosing for carbohydrate content if your mother looked after him.
I wonder if he’d agree to contact his surgery and ask for an appointment with a DSN, and for you to accompany him.
Is there anyone who could help him with the task of looking after your mother?
I also wonder if you could ask that you can get his Libre readings transmitted to your phone? I’m not sure if it’s possible to do this as well as transmitting them to his surgery.
If his surgery, the GP and DSN, could see and download his readings then action may be faster.
His high and low glucose readings are probably contributing to his irratability; I wish you luck, and sympathy.
I know that in the U.K. the medical profession can’t discuss a patient’s medical issues without that patient’s permission, but I also wonder if it’s reached the stage when you should ask him to set up a Power of Attorney for both your parents. https://www.gov.uk/power-of-attorney. The ways the two powers are described are pretty brutal so I fear, from what you say of him, that he’d find it difficult to accept.
I hope some other people look at your thread too as I’m just one voice and I’m not an expert.
As far as his food is concerned, do the ready meals have labels that tell him the carbohydrate content? Does he know how much insulin to inject for the quantity of carbohydrate?

 

[mouseee]

Being a child of aging parents has plenty of challenges! Been there, done that!

My mum was T2 on insulin and very poorly controlled. It's really hard to see anyone,let alone a parent seemingly not looking after themselves. I asked a Dr once how I should go about getting her to eat properly and they said that that was tricky as she has to want to change her food and lifestyle. It's not a nice thought but unless we are there 100% of the time, we can't influence everything they eat.
I would look into social care for your mother if your father isn't able to care for her properly. I think this is so important as it will help you to know meds are being taken and food is actually being eaten! It's definitely worth seeing if she's eligible.
Some food delivery services like Parsley Box are much more home cooked and arrive frozen. Much better choice for ready meal and my father in law asks for them when we so a shop for him.

Power of attorney only comes into play when the person is incapacitated. It also has to be set up before the person is unable to set it up. We found this out because my mother in law has dementia.

It's easy to get permission to discuss your parents health, they simply need to write a letter giving permission for the drs to put on file. We've done it for my husband as he sometimes needs me to check what the drs have said to him!!

 

[EllieM]

I think this morning was the second time in the last week that I found him on the floor, unable to get himself up, or even get the glucose he needed, until instructed.

I think you need to talk to his care team as a matter of extreme urgency. Falls caused by hypos in elderly diabetics are a very big danger.

My mother in law broke a hip from a fall just 2 days before the council care team were due to fit mobility aids into her house, and she never walked again. (Sorry to be brutal).

Is your mother physically or mentally incapacitated? Am thinking if the former she may still be able to provide some help to your father but if the latter it may just all be too much for him. For example, she could press a panic button if he was hypo and unable to self treat.

How is his mental state? His wife's health might be a cause of depression for him but is dementia also at play? Frequent severe hypos won't be improving his mood or cognitive powers. I am wondering if you need to look into social care for both parents.... Or at least, more help for them if they are staying at home.

Sorry to be so negative. I believe you should be able to get his libre results sent to your phone, which would provide some help. Unfortunately libre failures aren't uncommon, though as a dexcom user (who also experiences sensor failures) I'm not the best person to judge. He really needs to be encouraged to apply a new sensor if the old one fails.

Good luck.

 

[ConcernedRelative]

Wow, I'm tingling from head to toe with amazed appreciation for the generosity of this forum.

I'm looking for the contact details for the dietician as I believe they're unaware of the severity of the situation. Yesterday's fall has left dad with a big bruise on his forehead and I think he's injured his wrist. Today was 2nd consecutive hypo, mum mentioned it may have began around 7, but glucose administered and dad's up and compus mentis. First order of the day: finding out what was eaten when, checking logs and dose records, then getting sensor issues reported and replaced.

The nhs team also are without the data from the app, so am going to retry diabox (app launch failed on first android device, my rooted s20 )

Mental state isn't great, earlier he said in exasperation "please let me die tonight" , but he got some exercise and fresh air today (basically unprecedented) which i hope helps in every way (seems happier now, regaling tales of today's escapades : )

So many thanks for replies and insights and being brutal, mother is physically incapacitated, recovering from mental incapacitation.

I need to get that letter of consent filled in, along with POA

We located the UK freephone number and reported the failing sensors, replacements expected in 3 days, and prescription replacements received today for the interim, after the sensor that was installed yesterday again reported replace sensor

Dad had an appointment for blood tests, to see how one of his meds is affecting his levels.

Thanks again !!!

 

[ConcernedRelative]

Morning all, groundhog week. Waiting for librelink CS to open to arrange latest replace sensor, which has been happening almost every day, so frustratingly we have missing data from sensors since last scan at midnight. I tried a scan with diabox, just in case it was just the reader device having the sensor issue, but diabox also reported an error.

Awaiting visit from the nurse today, already the evening bg was reduced by 2 a couple of nights ago, which may have helped (time until responsive from severe hypo was much less this morning) but more action(s) still required.

I suspect that further reductions in insulin are required, as dad doesn't eat much / enough.

He's almost as fussy an eater as he is irritable... I don't suppose there's any decent magic evening snacks that he could consume that could help raise his levels, and keep them up? I'm guessing nuts and seeds are out the question with his dentures, but wondering if he might be willing to try some healthy (homemade) shakes , or whether he should have weetabix for supper also, for sustenance.

Really appreciate any tips, do's and don'ts, and any other suggestions that could be worth checking.

Many Thanks

 

[AndBreathe]

Morning all, groundhog week. Waiting for librelink CS to open to arrange latest replace sensor, which has been happening almost every day, so frustratingly we have missing data from sensors since last scan at midnight. I tried a scan with diabox, just in case it was just the reader device having the sensor issue, but diabox also reported an error.

Awaiting visit from the nurse today, already the evening bg was reduced by 2 a couple of nights ago, which may have helped (time until responsive from severe hypo was much less this morning) but more action(s) still required.

I suspect that further reductions in insulin are required, as dad doesn't eat much / enough.

He's almost as fussy an eater as he is irritable... I don't suppose there's any decent magic evening snacks that he could consume that could help raise his levels, and keep them up? I'm guessing nuts and seeds are out the question with his dentures, but wondering if he might be willing to try some healthy (homemade) shakes , or whether he should have weetabix for supper also, for sustenance.

Really appreciate any tips, do's and don'ts, and any other suggestions that could be worth checking.

Many Thanks

I'm not T1, so won't say anything specific about your father's care, except to say, "Bravo!" to you for being so concerned and "walking the walk", not just talking the talk.

In terms of Power of Attorney, it's a process that requires specific processes and tracks to be followed, with witnesses etc. A couple of years ago, we did my partner's Medical PoA and it took him a few weeks to get around his witnesses and discuss the attorney "duties" with both attorney and substitutes (very advisable for longevity). All of that done, it then took almost 5 months for it to go through the final stages - steps on the "other side", and various sort of cooling off notices, but it'as done now.

We are just bout to do Financial PoAs now, so we'll play on the same merry-go-round, except it is a little more complicated.

So, using a gazillion words where a handful would do, please do open discussions, sooner, rather than later. The prospect of losing control in one form or more is rather unsettling and it may take a little while for your parents to get their heads around what should be done.

 

[Fairygodmother]

Healthy longer lasting snacks in the evening plus dentures?
Banana (could be included in a smoothie/shake), porridge, weetabix is fine, and if the morning hypo tends to happen at the same time each day then an early morning snack before it strikes might solve it. If, and from what you’ve said it’s doubtful, your father’s willing to set an alarm for it.
I hope the nurse can advise about reducing the doses of insulin; it sounds as though your father might not have been given the more modern methods of dosing for carbohydrates eaten.
It’s a constant worry for you. You’re wonderful to keep on trying.

 

[Fairygodmother]

Just thought of some more evening snacks. I’m assuming he may like things that were common in his youth such as bread and butter pudding, apple charlotte . . .

 

[ConcernedRelative]

You guys rock, thanks again!
Yesterday I found some notes I'd made on Insulin Sensitivity and ratios and TDD, including test info to check background doses.
Also I found the librelink info I was after, it says the sensor will sync with the app if close enough and no obstructions, but this isn't being observed, so this morning we'll review and try to test the alarms, and if no alarms we'll use the app on a smartphone.

Went to wake dad as mum's concerned he's having a hypo and should be up, to discover the sensor is again reporting replacement required (installed 3 days ago), so again without data, which is beyond a hindrance - I really wanted to drill down and check activity after an evening high reading of 17 (quite unusual, as normally readings are low)

I wonder if there's other sensors that are more reliable, or any info to help prevent these frequent replace sensor errors, assuming this is out of the norm, and avoidable.

I think I'm going to raise these sensor issues with the diabetic team, so they're at least aware. Assuming it's not common, not surprised if it's just us that's jinxed.

Be well, you wise & kind warriors

 

[Lakeslover]

I’m type 2 not type 1 so I can’t comment on the insulin, but I do use libre 2 sensors. I haven’t had one fail for well over a year. Where does your dad place them? Could he be partially dislodging them? Could he be lying heavily on them or sweating in bed causing the glue to fail? I use a tegaderm plaster to keep mine stuck, and less likely to lift if I knock them.
steep rises or falls can cause the sensor to say unavailable wait 10 mins. I have found waiting at least that long is best. Repeated scans in the 10 minute period can then give a sensor failed message.

with the powers of attorney could you introduce it by saying you are looking to the future and doing yours, and that it would be good for them to do so to? The last one I did for my mum took well over 6 months to be processed so the sooner the better.

 

[lovinglife]

I can’t comment on anything T1 or the workings of the sensor as I’ve never used one and I maybe not at all right but could your dad be pulling at the sensor in his sleep? Maybe it’s irritating him and he’s fiddling with it unbeknown to him?

Also totally agree with others about getting both POA set up ASAP. The medical one doesn’t kick in until they don’t have capacity to make their own decisions but the financial one can be used as soon as it’s granted and take my word for it it’s an absolute godsend to be able to deal with things as simple as bills & banking. I had both on my dad who had dementia, never really used the medical one but the financial one I started using when he still had full capacity as it took the responsibility of his shoulders & made my life considerably easier

 

[ConcernedRelative]

Morning campers.

We now have a smartphone for dad, once the current sensor is done the next will be activated, and hopefully this will help him, as he seems reluctant and/or unable to help himself

I wonder how many of yall have ever experienced such confusion during an attack that you don't even know what glucose is, after eating them every day for 40 years. And whether it's psychology (depression/defeat) that explains behaviour (not checking the thing that can keep you well, or even save your life)

I do wish I could instil some empathy, and motivation.

Quick questions on the rule of 15;
Does everyone follow this, when needed, eg levels below 3?

And am I right in thinking
a) that's ~= four fast acting lift tablets, EVERY 15minutes, until levels are elevated above the low danger threshold?
And b) do you then often (or always) follow with q snack, or a meal?

Am hoping to record data over a few days will more info on details, to see if the slow insulin dose he's on is still too much, if his insulin sensitivity has changed, if there's some adjustments to how much fast acting... or if he just needs to eat better earlier and check more often...

Thanks!

 

[ConcernedRelative]

Each tablet contains 3.7g of glucose

just found that on packaging, after a fairly useful confrontation with dad, who perhaps rightly felt more than a little persecuted; I explained and apologised and added that much of my frustration stemmed from the fact that the reader os saying LAST SCAN 00:00 (like it usually does in the morning during the latest crash) and whether that's inaccurate.

His response was along the lines "I didn't need to check Cause I had a brioche then..."
(Needless to say we may disagree here)

Is there a discord server/ pillow I can scream and vent my frustration into?!!

Today's executive decisions include
- reminders to check readings regularly, especially around meals, to try and see if the quite massive fluctuations can be managed , and/or explained (2--28, usually v.low , or v.high)

On that note, time to suggest levels are checked, and maybe a light breakfast... happy thoughts (and wish me luck)

(12:44)
- dad confirmed lift tablets are like 2x detro, and just two lift elevated levels from ~2.4 to ~8

- Background/ slow acting insulin also administered, and still fasting since last proper meal, maybe ~18 hours ago.. next polite friendly reminder suggestion to EAT!!! in < 30

 

[mouseee]

You are doing an amazing job!
My mum never seemed confused when high or low but she did when she had some kind of infection.
She rang me once to ask me if I'd had her nursing exam results yet so she could manage the ward she was on at the time. She did spend 40 years as a nurse but wasn't taking exams at 70!
I rang the ward to ask them to check for infection.
I hope you can get the monitors to work. It would at least give you a little peace of mind.
Can you set his phone alarm to remind him to eat??

 

[ConcernedRelative]

I could! Will he adhere, or maybe overcome his loathing and technophobia to disable? Quite likely!!

Thanks for your kind words.
My insulin-sensitivity theory is being tested- just had a high of 18, less than an hour after breakfast (7 units for the ~70 grams in content- I haven't fact checked these yet, but trust accuracy)

I vented at my gpt, and got some good stuff I may share. Interestingly, of all the supposed influencers (pain stress etc) it's stated/reported that smoking increases levels. I mention this as smoking may be my dad's PRIMARY method of attempting to manage his spikes, even more than correcting doses... questionable?

Wonder if a) many others still suffer the crippling addiction of nicotine, AND b) if they also observe reductions in BS levels, contrary to what's reported.

 

[ConcernedRelative]

I wondered about poll options on this forum (or an adhoc, external ala googleforms) re who smokes etc, and found all them calculators...

fwiw, 1: the bolus metabolic rate
(think that's what it stands for, not yet sure of significance or value of knowing)
nb: height and weight reported; inherent inaccuracies inevitable!!

 

[ConcernedRelative]

So this morning dad is a lot better than usual. last night's meal (fish pie) was earlier (maybe around 7), but was only the 2nd meal of the day (3 had been planned, but distractions and delays resulted in only two being had).

Dad stayed up til 3:30 (attempting to get to target of 12) consumed: glass of milk, handful of black grapes, 2 choc brioche, flapjack, bread and butter

fasting level was reportedly around 2 ... so not great.

Not sure if this suggests that fast acting insulin is more effective than believed (insulin sensitivity), and ratio should be adjusted (from 1:10)

Will continue to probe, and ponder.

Be well comrades! ✌

 

[Fairygodmother]

Are you doing all this with the help of the DSN @ConcernedRelative?
It seems that you’re undertaking a crash course in Type One management and it would be good to have your father’s medical team on board to answer queries and give advice.
For instance, does your father wait until his readings are at a certain level before he eats carbs? (For me, if I’m above 8 when eating carbs I’ve injected for will usually make my readings rise much higher, but we’re all different.)
I can also empathise with your father’s apparent anger about the demands of Type One. Type One is a 24/7 lifelong sentence. There’s no escape.
And yes, low blood sugars do cause confusion: the brain, like the rest of the body, needs glucose plus oxygen to provide the energy required to function. Without enough glucose executive functions decline. Too much glucose clogs up veins, capillaries and arteries.
Blood sugars that are too high or too low can also affect emotions and behaviour.

 

[EllieM]

I wonder how many of yall have ever experienced such confusion during an attack that you don't even know what glucose is, after eating them every day for 40 years. And whether it's psychology (depression/defeat) that explains behaviour (not checking the thing that can keep you well, or even save your life)

From personal experience, if I go low enough I become irrational, and don't necessarily believe I'm low, let alone have the wherewithal to find/recognise glucose. But luckily I haven't been that low in ages, and sensors plus (now) insulin pump ensure I don't get that low (hopefully, crossing fingers and toes and touching every piece of wood I can find).