Uncontrolled Diabetes So Being Sent To Nursing Home

[BA66]

He really needs to get his BG under control. When mine were up at his level, I couldn't think straight. I had to give up on my uni studies because I simply couldn't retain information. Be sure to ask them to check for a UTI too, as they are common when the BG is going really high. He may also have delirium, which is a temporary condition, more common in older adults admitted to hospital, and easily confused with dementia. All the best to you and your brother.

Thank you for your reply. Very useful as the hospital is keen to put him in the dementia box though his tests on that point were clear. We are trying to get more input from diabetic team and point out that the symptoms he was admitted to hospital for haven't actually been resolved at all. His Bs was still 22 before breakfast after 2 months of hospital care.

 

[BA66]

Thank you for your reply. He was admitted with blood sugar highs and confusion, which has reduced a bit, he has had 3 different tests for dementia but he shows no signs, although that will ve the gall back diagnosis sadly. ... We are fighting him to get more help with BG stabilisation. Unfortunately it seems he may have had uncontrolled diabetes for a few years, something we need to get him to address as well as get good medical input. This forum has been very useful as my sister and I are very ignorant of whats available and difficult to put options forward about management at home rather than a nursing home. He is a self funder so perhaps it's easier too....
Many thanks.

Thank you for your reply. There are a lot of angles to put in a post. I mainly wanted to know options of living alone with a diabetes that was difficult to control as we have no knowledge of this, my other brother is T1 for 40 years but hasn't had much trouble it's easy for hospitals to advocate institutions. The forum has been very helpful. I will ring district nurses perhaps ☺

 

[BA66]

Hello @BA66 Sorry to hear about this situation with your brother.

My concern with any nursing home is what provision would be made in their care to accommodate your brother, and how many staff have had training to help with insulin administration and general well being. So first thing would be to speak to the nursing home manager to ask this question.

Diabetes UK has some information for older people and care homes: https://www.diabetes.org.uk/Profess...-care-for-older-people-resident-in-care-homes

Hope this helps.

Thank you for your help. Is there info on different options of living at home though? That's hat I am most interested in.
Thanks.

 

[BA66]

Good to hear you are starting to get things sorted.

High stress levels can cause mental confusion, can cause high blood sugars, and create a sort of vicious circle. Managing diabetes, especially when you aren't doing it very well, can be very stressful.

So if you can manage to get specialist diabetes doctors on the case, and they can help with better control, things may well start to improve.

Thankyou. Yes some more positive fighting is required

 

[BA66]

Is this in the UK? this is a ridiculous situation. He should be being offered technology, like a pump, or cgm,to help him control his blood sugar.

As long as he is mentally capable of managing his diabetes, and as long he is reasonably fit it shouldn't be a problem.

Sadly, there are some areas where health services are not particularly good.

Contacting Diabetes UK would be a good start, if you're in the UK. He clearly needs proper representation, and an advocate, who knows what they are talking about.

Hi that's a really good option, I must look into that. Unfortunately his long term uncontrolled BS, as far as we understand there are no other factors been presented so far (there was some idea it was encephalitis but not sure now), has produced some confusion so he is not able to manage it himself. A vicious circle. My sister & I are doing our best to get him help but we aren't diabetic so doing our best without a lot of experience. They are trying to say he has dementia though all the tests dont show that. We are in the UK.
Thanks.

 

[BA66]

It sounds to me as if a change of consultant or hospital is required.
When was your brother diagnosed with type 1 ?
What have the hospital done to improve his control ? Have they tried different insulins ? As Fairgodmother has said, we don't know what the situation is, so that makes it difficult to offer advice. Sorry for the barrage of questions.

Hi again, my brother after 10 weeks in hospital still has dangerous swings. 3 today pre breakfast, then 29.6 after lunch & again 29.4 before tea. I remembered your advice. I think he needs to go to the BRI near me as this hospital isn't helping. Really worried he will go into a hypoglycemic coma or get a stroke or organ damage etc. Been googling hospital transfers but no joy do you have any knowledge about this or where I can get info pls?
Will try calling BRI tomo anyway.....
Thanks for your suggestion.

 

[Alison54321]

Hi again, my brother after 10 weeks in hospital still has dangerous swings. 3 today pre breakfast, then 29.6 after lunch & again 29.4 before tea. I remembered your advice. I think he needs to go to the BRI near me as this hospital isn't helping. Really worried he will go into a hypoglycemic coma or get a stroke or organ damage etc. Been googling hospital transfers but no joy do you have any knowledge about this or where I can get info pls?
Will try calling BRI tomo anyway.....
Thanks for your suggestion.

Swings that big are very worrying. This is incredibly poor care. Transferring him might well be the best solution. Just as well he has relatives who care about him, it's terrifying to think what would happen if he didn't.

Hope you get it sorted out.

 

[BA66]

Swings that big are very worrying. This is incredibly poor care. Transferring him might well be the best solution. Just as well he has relatives who care about him, it's terrifying to think what would happen if he didn't.

Hope you get it sorted out.

Thank you for your support. This lack of diabetic care in hospitals is a comp,ete revelation to me ( sadly). Though my sister had already come across the fact on this site that 1 in 4 diabetics in hospital experience hypos......

 

[Pipp]

@BA66
Something you perhaps are not aware of, and has financial implications, is that patients deemed to have nursing care needs in a care home are generally funded by NHS. If the main diagnosis is dementia, that is often considered to be social care, and has to be self funded. It is important, therefore, if your brother needs care that requires nursing skills rather than caring for things such as personal safety, hygiene, feeding, keeping safe, that can be provided by someone not medically qualified, you make sure he has the main cause of his incapacity to be due to his diabetes, and not dementia.

 

[BA66]

@BA66
Something you perhaps are not aware of, and has financial implications, is that patients deemed to have nursing care needs in a care home are generally funded by NHS. If the main diagnosis is dementia, that is often considered to be social care, and has to be self funded. It is important, therefore, if your brother needs care that requires nursing skills rather than caring for things such as personal safety, hygiene, feeding, keeping safe, that can be provided by someone not medically qualified, you make sure he has the main cause of his incapacity to be due to his diabetes, and not dementia.

Hi, thankyou for your reply. Yes we were aware of that. We are just keen for them to get his BG to stabilise as very concerned about the detrimental effect on his general health and brain health with this prolonged period of instability.

 

[Pipp]

Hi, thankyou for your reply. Yes we were aware of that. We are just keen for them to get his BG to stabilise as very concerned about the detrimental effect on his general health and brain health with this prolonged period of instability.

Hope his health improves soon. Take care of your own wellbeing, too.

 

[kitedoc]

Hi @BA66, As a 64 year old who has ben on insulin for 51 years I find your brother's plight very sad.
I wonder whether there is some brain trouble that your brother developed that lead to his diabetes being less well controlled or whether it was the other way around.
There are publicised, routine tests for checking for causes of dementia-type conditions (nhs.uk Dementia Guide - Tests for Dementia.
If your brother is so unwell, is he presently capable of consenting to treatment and make decisions about his health ? If he is deemed not to have capacity to be able to consent to treatment a decision-maker, either one he has appointed in a previously filled out Advance Directive, Living Will etc, sometimes a family or patient representative or a government appointed Advocate. (Whatever the law is in UK.
Whoever that person is, is supposed to be consulted and consent for treatment and decisions about your brother like nursing home placement AND to keep the family informed of such decisions.
That person is supposed to act in the patient's best interests which includes finding out from family what the patient would be likely to decide about such things as being placed in a nursing home, seeking a second opinion regarding his health, brain-wise, diabetes-wise, if needed.
I am also concerned that if your brother's diabetes is so poorly controlled in a hospital environment how likely is it that he is in any state to be at his best mentally to make decisions? One could perhaps be forgiven for wondering is he has somehow fallen in the 'too hard' basket, a situation in which he finds all the support and advocacy possible.
I hope you can obtain some answers to the above queries and be able to insist on maximisation of his health. As others have said, there maybe diabetes treatment yet to try, current management maybe quite suboptimal but it is difficult to know without more precise information. The decision-maker (if there is one, or why isn't there one ?), consultants etc all need to be available in some way to help your brother's family, yourself best understand what is happening and what are the best steps forward.
My Best Wishes go with you.

 

[BA66]

Hi, thank you very much for your detailed reply. After taking action to try to move him from that hospital a new consultant has turned up and seems to be on the case, has said he will visit daily. Also another Dr involved (who was on holiday) has repeated his view he has some viral encephalitis, he originally stated that but the doctors in charge of his treatment (I use that word lightly) didn't agree and nothing was in his discharge notes and they got very funny when I mentioned it. We are still waiting for last tests on that. He has MRI, PET scan and no particular signs of dementia/alzheiners have showed, other than slight normal aging.
The new doctor has also finally said he thinks he has brittle diabetes, which he had suggested to the diabetic nurse (the only one from the team we have contact with and who visits brother) who had never heard of it before?! This is a "specialist" diabetic nurse. We had also met a lovely diatecian but found that there is no diabetic diatecian for inpatients, but there is for outpatients? Incredible.
Re decision making we have been looking into that, it's still a grey area if he has capacity (he is fine, but then confused) but that's our next challenge as if he goes to nursing home for convalescence, being self-funded it's a big issue as it's about 800-1000 pw. We are able to be involved with his decision making to some extent. Last week at the discharge meeting (he was put on discharge ward as deemed medically fit) my sister complained about lack of any progress in 10 weeks and the D nurse spoke to consultant and has given new regime of 2 injects rather than 4 a day which also means, if well enough at some point, he could live outside an institution with district nurses, carers, family support etc which makes things more flexible. Phew!
Thankyou for your support ☺

 

[Pipp]

Hi, thank you very much for your detailed reply. After taking action to try to move him from that hospital a new consultant has turned up and seems to be on the case, has said he will visit daily. Also another Dr involved (who was on holiday) has repeated his view he has some viral encephalitis, he originally stated that but the doctors in charge of his treatment (I use that word lightly) didn't agree and nothing was in his discharge notes and they got very funny when I mentioned it. We are still waiting for last tests on that. He has MRI, PET scan and no particular signs of dementia/alzheiners have showed, other than slight normal aging.
The new doctor has also finally said he thinks he has brittle diabetes, which he had suggested to the diabetic nurse (the only one from the team we have contact with and who visits brother) who had never heard of it before?! This is a "specialist" diabetic nurse. We had also met a lovely diatecian but found that there is no diabetic diatecian for inpatients, but there is for outpatients? Incredible.
Re decision making we have been looking into that, it's still a grey area if he has capacity (he is fine, but then confused) but that's our next challenge as if he goes to nursing home for convalescence, being self-funded it's a big issue as it's about 800-1000 pw. We are able to be involved with his decision making to some extent. Last week at the discharge meeting (he was put on discharge ward as deemed medically fit) my sister complained about lack of any progress in 10 weeks and the D nurse spoke to consultant and has given new regime of 2 injects rather than 4 a day which also means, if well enough at some point, he could live outside an institution with district nurses, carers, family support etc which makes things more flexible. Phew!
Thankyou for your support ☺

After he has been medically discharged he ought to be seen by the Therapy team. They have the final decision, and need to have in place a care plan before he goes home. They can overturn any medical consultant decision to discharge a patient if sufficient care has not been put in place. If you have concerns about him being discharged ask to speak to the Therapy Team Manager, and make sure your concerns are addressed.
Best wishes and well done on standing up for your brother so well. He is fortunate to have you on his side.

 

[Resurgam]

I hope that an alternative to a nursing home can be found - as the one I was working at was well run in the main, but regimented - to such an extent that I had to go to the dining room and report a patient lying unconscious in the corridor because all the 'caring' staff were there assisting in serving the meals as that was the way the schedule worked. Someone went around and got the inmates out of their rooms, but once out they were expected to arrive at the table and eat with no further checks. The kitchen staff knew there was someone missing as a plate had not been collected, but they were on the other side of a hatch busy serving up the desserts.
Someone who could not fit into the working like clockwork mentality baffled the system.

 

[BA66]

Thanks for your reply. I am very loath for him to go in a home, even for convalescence, but it might, sadly, be necessary. I live on a 1 bedroom houseboat and there is no other family "space" available and he has no family/friends near his current flat, which is a very long way away.
But thank you for your reminder re the reality of homes. Chris, before getting ill, had planned to move to this greater care housing complex on retirement. It's independent living with an on site care team if needed and restaurant and other facilities. I was very happy to get my elderly Mum in there and avoid the home option, although we also had to continually fight hospital, social services and the dominant prevailing culture, to allow her to return home after hospital visits. She was forced into respite care for convalesce so I have an idea of staff-inmate ratios and the regulated, mainly profit-orientated, settings . We may have to consider one short term post hospital as worried re night time hypos, but long term, I will do my very utmost to avoid an institution life for him.
Thanks.

 

[BA66]

Hi, I am posting on behalf of my brother who is type 1 diabetic & currently in hospital with uncontrolled diabetes. The hospital, after 2 months, haven't been able to stabilise his blood sugar (no diabetic menu, no meal monitoring, little interaction with diabetic consultant) and he has had hypos at night and daytime levels reaching to high 30s. There is a discharge meeting thursday and the recommendation will be for a nursing home. My brother is a very fit 64 year old and I would like to know if people with similar challenges have been able to live on their own with district nurses (and family support) without being shut up in an institution .
I am not sure we will have any say on the matter, but I would like him to be in a greater care housing complex/sheltered housing with medical input and quality of life...
Thanks for any input. I need info pls.

My brother has been in East Surrey Hospital for 14 weeks. He has been diagnosed with brittle diabetes. In all this time they haven't been able to stabilise his blood sugar, he hasn't been seen by a diatecian, he has had very infrequent visits from the diabetic team, there is no diabetic menu, he hax had no help witb hos menu though is suffering from some confusion and we have been told he is medically fit, although his BG is in late 20s. Just found he had a hypo yesterday and now today he has had a keto acidosis attack . We were just about to discharge him to get him nursing outside the hospital as we have given up hope after many complaints......
Been googling it but does anyone have experience of recovery periods etc? Very concerned. We want to move him to another hospital that will hopefully treat him better and be closer to family so we can keep check on things....
Thanks.

 

[KK123]

My brother has been in East Surrey Hospital for 14 weeks. He has been diagnosed with brittle diabetes. In all this time they haven't been able to stabilise his blood sugar, he hasn't been seen by a diatecian, he has had very infrequent visits from the diabetic team, there is no diabetic menu, he hax had no help witb hos menu though is suffering from some confusion and we have been told he is medically fit, although his BG is in late 20s. Just found he had a hypo yesterday and now today he has had a keto acidosis attack . We were just about to discharge him to get him nursing outside the hospital as we have given up hope after many complaints......
Been googling it but does anyone have experience of recovery periods etc? Very concerned. We want to move him to another hospital that will hopefully treat him better and be closer to family so we can keep check on things....
Thanks.

I really feel for you, we had the same with my Mum, VERY brittle diabetes, in hospital for months at a time. I only wish I knew then what I know now. No matter WHERE he is, if it's a hospital/nursing home etc, they will feed him what they are told to by the NHS rules, ie a high carb diet. This will mean higher doses of insulin and therefore even more highs and lows (in my opinion and in my Mum's experience). It then becomes a vicious circle. There is no such thing as a 'diabetic' diet these days and even when there used to be, it was bread/pasta/rice/potato based, ALL high carb. I am so sorry I don't know the answers but what I do know is that I wish I could have had my Mum at home so that I could have fed her properly. As to any recovery period, it varies for everyone, my Mum never did achieve 'normal' levels even when she came out of hospital and in to a Nursing home (at 80 years old), they fed her lovely homemade (high carb) food and looked after her but as I said, the NHS guidelines on food did NOT work for her. The dietician will also quote the eatwell plate so I wouldn't hold out much hope there. Sorry if this sounds negative but if I had my time again with my Mum I would insist on a low carb diet even if I had to lie and say it was for religious reasons, my Mum was on insulin and it was on a flexible basis so because the amount of food she ate varied the insulin amounts swung between 4 and 20!!! No wonder she was 'brittle'. I am convinced lower carb for a (brittle) type 1 means less insulin therefore less likely for swings and wildly guessed mistakes. x x

 

[BA66]

I really feel for you, we had the same with my Mum, VERY brittle diabetes, in hospital for months at a time. I only wish I knew then what I know now. No matter WHERE he is, if it's a hospital/nursing home etc, they will feed him what they are told to by the NHS rules, ie a high carb diet. This will mean higher doses of insulin and therefore even more highs and lows (in my opinion and in my Mum's experience). It then becomes a vicious circle. There is no such thing as a 'diabetic' diet these days and even when there used to be, it was bread/pasta/rice/potato based, ALL high carb. I am so sorry I don't know the answers but what I do know is that I wish I could have had my Mum at home so that I could have fed her properly. As to any recovery period, it varies for everyone, my Mum never did achieve 'normal' levels even when she came out of hospital and in to a Nursing home (at 80 years old), they fed her lovely homemade (high carb) food and looked after her but as I said, the NHS guidelines on food did NOT work for her. The dietician will also quote the eatwell plate so I wouldn't hold out much hope there. Sorry if this sounds negative but if I had my time again with my Mum I would insist on a low carb diet even if I had to lie and say it was for religious reasons, my Mum was on insulin and it was on a flexible basis so because the amount of food she ate varied the insulin amounts swung between 4 and 20!!! No wonder she was 'brittle'. I am convinced lower carb for a (brittle) type 1 means less insulin therefore less likely for swings and wildly guessed mistakes. x x

Thank you for your reply. It's very difficult trying to do your best for loved ones in this climate. My sister a d I are not diabetic so struggling to find a way through this. We are both shocked at the treatment, or lack of care, for diabetics, we weren't sure if this was an isolated case or the norm.
Thanks for your support x

 

[BA66]

Thank you for your reply. It's very difficult trying to do your best for loved ones in this click ate. My sister a d I are not diabetic so struggling to find a way through this. We are both shocked at the treatment, or lack of care, for diabetics, we weren't sure if this was an isolated case or the norm.
Thanks for your support x

Typo - "climate"