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Dad's diabetes are out of control. advice/help needed.

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FuzzyWarble

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Apologies if I am posting this in the wrong place. Just need some help or some advice about my dad. He's in his early 70s and has always been secretive about his diabetes (not wanting help, not wanting to talk about it). This last year has been difficult for the whole family for various reasons.

Dad though has gone down hill, he's becoming more forgetful, making mistakes and covering them up and it's got to a point where he has been in A&E three times this last couple of months, and has had an extended stay in hospital. His diabetes are out of control, His most recent hypo was 2 nights ago, and his blood sugars on the whole have been horribly fluctuating. The hospital had promised us that a whole care plan was in place for when he got discharged last time, however, no carers came to visit him on the first or second day, the district nurse did not want to come and see him, it wasn't until my sister made a big fuss that she did go and see him. When she visited him, his blood sugars were extremely high and ketones in his urine. He was sent straight back to A&E.

Yet despite still having a hypo while in hospital, and still getting really high readings, the hospital phoned up my sister today to say he was discharged! We have been asking about his care plan, and why nothing was in place last time he was discharged, despite promises, and they have been really unhelpful. Again today, they were unable to answer questions related to his safety, unable to really explain why things are so out of control, and seem to have an expectation me and my sister will be caring for him, we both work full time and are not home every night due to seeing partners etc.

The big worry is this, and we keep repeating it: He will be home by himself for most of the day, he is relying on a zimmerframe after a fall, he often wets himself during the night, if he's home by himself with no help coming in during the day and district nurses to help him take medication, he WILL be right back in hospital.... if not worse.
 
I get the impression now that if a person has family then they are left to it. They talk the talk and then that's it, you never hear from them again. I'm looking after Mum with dementia and I'm basically just left to it. My brother helps us as much as he can but he has his own health problems as do my sisters. Good job I'm on my own and can devote my life to caring for her.
 
That’s our experience with dementia too. I appreciate it’s not the same as diabetes, but the two combined is a massive recipe for disaster. Darling mother in law has dementia, and was in and out of hospital with terrible UTIs, in the end Mr Madeline and father in law had to refuse to allow her to be discharged into their care to get proper help. I can’t imagine how scary it must be for you to add diabetes into the mix :(
 
Hi Fuzzywarble, welcome to the forum. This must be very worrying for you. Can I ask if your Dad is type 1 or two? I would guess type 1 judging by what you said, but it’s better to be sure.

What sort of mistakes has he been making? He may be uncommunicative because he doesn’t want to accept loss of independence. My 78 year old type 2 Dad can be stubborn too. Fortunately, he’s in good health, all things considered. His medication changed last year when he had a heart attack. I don’t see him that often due to geography, but I’m firm with him if I need to be. Is your Dad checking his BG regularly? If he won’t tell you the levels, don’t hesitate to check the meter. Is there a care plan in place now? If not, don’t feel bad about contact the hospital every day until there is one. It certainly seems as if he needs quite a high level of care. Diabetes UK has a helpline that you can call for advice. The details can be found at https://www.diabetes.org.uk/how_we_help/helpline

Good luck and let us know how you get on
 
How sad and the problem is lack of funding for the NHS and the community plus incompetence. I worry that when I get dementia and end up in hospital with high BS that I will be subject to the same lack of care and I can't see any way round that without good family support. Sorry I can't offer any help.
 
Today the hospital discharged dad with out notifying anyone. We only found out as the district nurse called my sister at work, to find out if it was OK to visit him at home this evening.
They left him sitting in a discharge lounge with no keys or phone, no confirmation of a care plan, and without the hospital bed being delivered by occupational health (this happens on Monday)
 
Absolutely despicable and incompetent. Grrr...
 
I think that you ought to complain about this sequence of errors - maybe start with your father's GP and write out all these happenings and ask for assistance in getting things put right - your dad is in a very vulnerable situation and needs care.
 
Please contact PALS and make official complaint
 
Yes ... Def contact PALS and also social services for an assessment.... No point waiting for hospital to do care plan... Too many cogs in the wheel ..
 
Hello .. so sorry to hear the problems you are having with getting a obviously needed care plan in place to support a safe discharge home.. I work for the NHS as a discharge coordinator.. does the ward where your father has been have a discharge support worker? .. can I also point out that it everyone’s right under the care act to an assessment. Please if your father has been discharged without any care and support plan contact your local council and ask them for some respite for Dad until this can be put in place. Explain that he is vunrable. If Dad doesn’t want to go into a respite placement then ask the social services if there is a rapid response team that could be put in place until a long term plan is put in place.. unfortunately as with anything a lot depends on a person financial situation! If Dad has savings over£23000 then he will properly have to self fund but they should still help you find a care company.. please speak to PALS and the hospital and also ask dads GP for daily district nurse visits for diabetes care .. so sorry you have had this happen hope this information helps in some way .. good luck x
 
Hi, long time no update. I'm exhausted and drained and was even in hospital myself for a couple days to a bad allergic reaction. It's just the same old story with my dad right now. He's upset as the district nurses keep sending him to A&E.

At least twice a week right now. Dads been in hospital a couple days now. Today, I nearly lost it with the doctor who wanted to discharge him. She came to say his insulin has been adjusted yesterday and was being sent home as his blood sugars were under control. Now great news you think? No. Last night before bed they were down at 3.2. this morning he woke up and they were over 30 and had been over 20 all day (coming down at least). The doctor spoke with a condescending tone of voice, telling me about his food being poor (no it's not we are keeping a food diary to prove this!). Or his insulin levels aren't right (then why are you discharging him).

I explained, look, if tomorrow morning his blood sugars are over 30. What do you think the DN will do? Send him right back to A&E for another wasted day. Don't tell me his blood sugars are fine and not randomly spiking up and down when they clearly still are.
 
So sorry to hear your Dad’s care does not seem to have improved :(

Have you ever had any training or support in insulin therapy to help your Dad?

There are online courses in insulin therapy for type 1s such as BERTIE which anyone can access, or books like ‘think like a pancreas’ which might give you some very useful pointers to support your Dad and hopefully reduce his glucose variation.
 
everydayupsanddowns said:
So sorry to hear your Dad’s care does not seem to have improved :(

Have you ever had any training or support in insulin therapy to help your Dad?

There are online courses in insulin therapy for type 1s such as BERTIE which anyone can access, or books like ‘think like a pancreas’ which might give you some very useful pointers to support your Dad and hopefully reduce his glucose variation.
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I appreciate your reply. I haven't even thought about it. But I will look into it. I find it really tough as I work full time and also help care for my partner, she has chronic health conditions. I'm just struggling.
 
Hi everyone,

I have another question I have a couple questions related to my dad I hope someone may be able to offer some help on.

I have noticed my dad literally has no real awareness when his blood sugars are getting to high or when they are getting too low, despite some really glaring obvious signs. His blood sugars fluctuate a lot, and really it can be for no real obvious reason. I notice things and can pick up when they are getting low or high. But he doesn't. So when they are low, he becomes irritable, his hands develop quite an obvious tremor, he becomes very unstable on his feet unable to answer simple questions, his eyes glaze over. Yet, he doesn't notice when these things start. when they go high he drinks lots of water, pees a lot and is very tired. He says he never feels any pain, never feels any nausea and that he feels fine, except for going to toilet. He also gets random bruises with no real explanation to how he may have got them.

Is this normal with older people with diabetes? Or could this be a sign that dad has a more serious neurological condition, which may also explain why is coordinartion has been deteriorating and short term memory is declining. Or it may just be seeing too much into it all. My dad does struggle with the correct monitoring procedure his diabetes nurse has given him, and when hes home and im at work, i need to call him to prompt him to check his blood sugars and to write them in his book in the right place and also to prompt him about the best course of action if they are high or low.

Should his doctors be getting him one of those continuous glucose monitoring devices? I've only just discovered about them, and to me this seems like the most logical thing? I'm surprised with his frequent trips to A&E and hospital stays this has not ever been suggested?

As regards to his current hospital stay, after a doctor attempted to discharge him on Saturday, an actual diabetes specialist on Sunday did not seem happy this was proposed. He is still getting random spikes and random lows even in hospital. Dad has been told he will not be going home until the end of the week at the earliest.

Also, I am kinda tired about the bad food assertion we tend to get....
 
FuzzyWarble said:
Hi everyone,

I have another question I have a couple questions related to my dad I hope someone may be able to offer some help on.

I have noticed my dad literally has no real awareness when his blood sugars are getting to high or when they are getting too low, despite some really glaring obvious signs. His blood sugars fluctuate a lot, and really it can be for no real obvious reason. I notice things and can pick up when they are getting low or high. But he doesn't. So when they are low, he becomes irritable, his hands develop quite an obvious tremor, he becomes very unstable on his feet unable to answer simple questions, his eyes glaze over. Yet, he doesn't notice when these things start. when they go high he drinks lots of water, pees a lot and is very tired. He says he never feels any pain, never feels any nausea and that he feels fine, except for going to toilet. He also gets random bruises with no real explanation to how he may have got them.
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Lack of awareness of elevated blood glucose is not uncommon I think. It’s quite individual and some people will feel grim as soon as they get into double figures, but for others high BG spikes can come as a bit of a surprise when looking at a BG monitor. If elevated BG is maintained, people generally begin to feel the effects, which are not pleasant, but these build up over time and rapid spikes are often unannounced.

Low BG, especially in the hypo range generally has significant symptoms to begin with (heart racing, tingling lips, extreme hunger, trembling, sweating, mental confusion, weakness, drowsiness, flashing lights and visual disturbance). However over time the body can ‘get used’ to lower BG levels with repeated exposure and fail to trigger the warning signs until lower and lower levels. This is impaired awareness of hypoglycaemia (IAH) and is quite serious as it increases the chance of losing warning signs altogether.

Is this normal with older people with diabetes? Or could this be a sign that dad has a more serious neurological condition, which may also explain why is coordinartion has been deteriorating and short term memory is declining. Or it may just be seeing too much into it all. My dad does struggle with the correct monitoring procedure his diabetes nurse has given him, and when hes home and im at work, i need to call him to prompt him to check his blood sugars and to write them in his book in the right place and also to prompt him about the best course of action if they are high or low.

Should his doctors be getting him one of those continuous glucose monitoring devices? I've only just discovered about them, and to me this seems like the most logical thing? I'm surprised with his frequent trips to A&E and hospital stays this has not ever been suggested?
Click to expand...

Certainly worth asking the question. Hypo unawareness is certainly an indication to use CGM with alarms in some cases (though not many are allowed CGM on the NHS). Frequent trips to A&E cos money though - and this could potentially be saved by better use of tech so it would be worth raising the question. Even something like Libre (which has no alarms) would help with day-to-day monitoring as only 3 swipes are needed for a full 24hr monitoring profile.

Both technologies are usually reserved for T1 unfortunately as that is where the clinical trial evidence was done.

As regards to his current hospital stay, after a doctor attempted to discharge him on Saturday, an actual diabetes specialist on Sunday did not seem happy this was proposed. He is still getting random spikes and random lows even in hospital. Dad has been told he will not be going home until the end of the week at the earliest.

Also, I am kinda tired about the bad food assertion we tend to get....
Click to expand...

Poor experience of diabetes management in hospitals is not at all uncommon I’m afraid. Diabetes is a very individual condition and people managing it effectively make 100s of time-critical treatment decisions around food and doses every day that it is very hard for a team of nurses/ward staff to replicate with the same intensity.
 
My dads blood sugars were really out of control and even very strange for him today, it's very odd. They went from almost having a hypo in the morning, to being up over 30 and with ketones in the blood and urine at around 7pm.

As stated previously, my dad is still in hospital. The only food he's eating is the food given to him in hospital, which is supposedly diabetes friendly. Yet, we had to sit and have hospital staff accuse him of eating sugary foods, when all he did other than be in the ward was go for a walk to get his newspaper in the morning and a walk with me in the evening to help bring his blood sugar levels down.

Its a tad annoying, but I guess quite a lot of people hospitalised due to diabetes complications have poorer diets and maybe eat lots of food which they shouldn't. My dad really doesn't :/. So I'm stumped. As are health professionals... Or maybe they just don't really want to investigate further than constantly adjusting medications.
 
FuzzyWarble said:
The only food he's eating is the food given to him in hospital, which is supposedly diabetes friendly.
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Make that clear to them. (I'm unable to suggest how to do this though :()
FuzzyWarble said:
Yet, we had to sit and have hospital staff accuse him of eating sugary foods,
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See above.
I know it's difficult dealing with HCP. I'm no good at it myself. You and your father have my sympathy.
 
Dad was on a drip during the morning, as his blood sugar levels were up over 30 this morning. It's quite frustrating being told everything is ok as they are in range right now. I keep insisting that this is a general trend and despite all the tinkering of insulin and regimented food regime. it is not all fine.

Have I added he is also in a "spillover ward", on his own for the last couple of days.... Which seems like really odd thing to do with a frail diabetic with fluctuating blood sugars :/
 
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