Relative in denial of type 1

[MickyFinn]

I have settled into life managing type 1 since last November pretty well, I don't enjoy it, but I know what I have to do and have accepted I have little choice but to make the absolute best of it.

On the other side of the spectrum, I have a cousin who has been type 1 for quite a few more years than I, and she certainly doesn't manage it well. She pretty much always has very high bg levels, often between 27 to 37, but she appears to be in massive denial of diabetes, even insisting that her bg levels are normal! She's currently in hospital having operations and treatment on an insect bite on her arm that became badly infected, and eventually went septic, in fact she was due to have the second op today but one of the nurses caught her binging on biscuits so the op was cancelled and put back. She cannot help but stuff herself with carbs, and without taking insulin to manage it.

She insists the carb portion list booklet she was given is validation that she can eat whatever she wants when she wants, and without insulin too. I was told right from the off that while only a very few foods were off limits, you know, those we would treat a hypo with, I had to always carb count and try to manage my bg levels. As she is under the care of the same hospital and GP surgery, I know they would tell her the same.

My question is, do I step in and tell her a few home truths, and that she is lying to herself and everyone else, that she's in denial? Or do I leave it well alone? I doubt she would listen, but surely I should say something, right?

 

[Juicyj]

Hi @MickyFinn To be honest it sounds like if you do confront her behaviour that she has a got an armoury of responses that she has already prepared and can come back with, so you're not telling her anything she hadn't already heard. If she was my relative I would ask her why she behaves the way she does and how she sees herself in the next 10 years. I would do it in a face to face environment, no distractions and show genuine concern, explain how you manage and why you do what you do and the life you want to lead. I have found that when living with a lifelong condition that some people can create their own self management rules and this can very often go against what the medical professionals tell us, there is often a reason why people behave the way they do and it's often driven by fear, so understanding what her motivations are could help turn her life around. I wish you well in helping her

 

[MickyFinn]

Hi @MickyFinn To be honest it sounds like if you do confront her behaviour that she has a got an armoury of responses that she has already prepared and can come back with, so you're not telling her anything she hadn't already heard. If she was my relative I would ask her why she behaves the way she does and how she sees herself in the next 10 years. I would do it in a face to face environment, no distractions and show genuine concern, explain how you manage and why you do what you do and the life you want to lead. I have found that when living with a lifelong condition that people create their own self management rules and this can very often go against what the medical professionals tell us, there is often a reason why people behave the way they do and it's often driven by fear, so understanding what her motivations are could help turn her life around. I wish you well in helping her

You're correct with suggesting that she has come up with her own set of rules, that happen to be very wide of the mark, and also that she has a set of responses ready to brickbat questions over how she manages it.

After having a chat with my mother just now on the phone about it, as I inevitably get asked questions about type 1 because of my cousin (she'd visited her), I have just been told that this morning the nurses had got her bg levels down to 5, told her not to eat because of the op, so she ignored that and decided to scoff an entire packet of biscuits because her bg was the lowest it's been.

Her attitude staggers everyone to be honest. I will possibly try and have a chat with her, although I don't know if I will achieve much.

 

[noblehead]

My question is, do I step in and tell her a few home truths, and that she is lying to herself and everyone else, that she's in denial? Or do I leave it well alone? I doubt she would listen, but surely I should say something, right?

Assuming she is currently in the same hospital where her diabetes care team are why don't you ask them if they can go up to the ward and have a chat with her.

 

[Juicyj]

You're correct with suggesting that she has come up with her own set of rules, that happen to be very wide of the mark, and also that she has a set of responses ready to brickbat questions over how she manages it.

After having a chat with my mother just now on the phone about it, as I inevitably get asked questions about type 1 because of my cousin (she'd visited her), I have just been told that this morning the nurses had got her bg levels down to 5, told her not to eat because of the op, so she ignored that and decided to scoff an entire packet of biscuits because her bg was the lowest it's been.

Her attitude staggers everyone to be honest. I will possibly try and have a chat with her, although I don't know if I will achieve much.

She is putting herself in a very dangerous situation, which she is justifying as right in her own head. Yes 5 is low for someone who is used to running high levels and it would of left her feeling as though it was too low, but over compensating with a packet of biscuits is too much. There could be many things running through her head, fear of hypos, fear of gaining weight or even denial of her condition but as you and I know, she is putting her life in jeopardy if she carries on this way. Good suggestion from @noblehead to get her team in to see her. I admire you for wanting to help her, but she has to somehow see that she does need help or otherwise you may struggle to get the message through.

 

[azure]

Do you think she knows what she's saying and doing isn't correct? Eg eating carbs and not taking insulin.
You said she insists her high levels are normal sugars - do you mean she lies and says she's 7 when she's actually 25, or do you mean she's saying 25 is fine?

Just thinking out loud here, but is it possible she has an eating disorder and is purposely eating without insulin and/or skipping injections?

Or is she in total denial?

 

[MickyFinn]

Assuming she is currently in the same hospital where her diabetes care team are why don't you ask them if they can go up to the ward and have a chat with her.

It's the only hospital in the area, so her consultant would work there, so that is one possibility.

 

[MickyFinn]

Do you think she knows what she's saying and doing isn't correct? Eg eating carbs and not taking insulin.
You said she insists her high levels are normal sugars - do you mean she lies and says she's 7 when she's actually 25, or do you mean she's saying 25 is fine?

Just thinking out loud here, but is it possible she has an eating disorder and is purposely eating without insulin and/or skipping injections?

Or is she in total denial?

She genuinely believes that a bg reading of 25 is perfectly normal, and justifies it by saying that normal range is different for everyone! She's more or less constantly in a state of hyperglycaemia. She also believes the carb counting guide she was given is a licence to eat any old rubbish without taking fast acting insulin! She appears to be oblivious to all the actual facts. When the surgeon/anaesthetist told her today that her eating after the allotted nil by mouth time before her operation because she could choke etc, she laughed it off and dismissed it. She's a law unto herself and appears to be completely ignorant. It has to be her attitude or lack of comprehension, as the diabetes care in this area is extremely thorough, I have found it to be.

 

[Emily101]

This might sound a little random, but how old is she and at what age was she diagnosed?

 

[azure]

She genuinely believes that a bg reading of 25 is perfectly normal, and justifies it by saying that normal range is different for everyone! She's more or less constantly in a state of hyperglycaemia. She also believes the carb counting guide she was given is a licence to eat any old rubbish without taking fast acting insulin! She appears to be oblivious to all the actual facts. When the surgeon/anaesthetist told her today that her eating after the allotted nil by mouth time before her operation because she could choke etc, she laughed it off and dismissed it. She's a law unto herself and appears to be completely ignorant. It has to be her attitude or lack of comprehension, as the diabetes care in this area is extremely thorough, I have found it to be.

Hmm, then perhaps she needs some strong words from her diabetes team? Sometimes people simply don't take in the facts and then have got used to the wrong information, so need to be firmly and repeatedly told the facts. Things like a normal blood sugar level are facts, and the potential for damage is a fact too.

Sometimes laughing off the facts is a kind of defence. It can then become a habit, and firmer words are needed to break through this defence, particularly if it's been there a long time. You mentioned her armoury of responses to people. She's obvioulsy found they work. But I'd hope someone can get through to her. Perhaps now she's in hospital might be a good time?

 

[Mrsass]

I know this doesn't help in the long run but, the packets of biscuits she's having in hospital - who is buying/supplying her with these?

As @Emily101 asked, how old is she? I'm assuming she's an adult & lives alone/without her parents?

 

[MickyFinn]

Hmm, then perhaps she needs some strong words from her diabetes team? Sometimes people simply don't take in the facts and then have got used to the wrong information, so need to be firmly and repeatedly told the facts. Things like a normal blood sugar level are facts, and the potential for damage is a fact too.

Sometimes laughing off the facts is a kind of defence. It can then become a habit, and firmer words are needed to break through this defence, particularly if it's been there a long time. You mentioned her armoury of responses to people. She's obvioulsy found they work. But I'd hope someone can get through to her. Perhaps now she's in hospital might be a good time?

I agree, she needs telling straight and that her attitude to it all stinks. I think she's one of those who only hears what she wants, and those who have tried to talk some sense have tried to be gentle, however she needs someone to be blunt.

 

[Robinredbreast]

I agree, she needs telling straight and that her attitude to it all stinks. I think she's one of those who only hears what she wants, and those who have tried to talk some sense have tried to be gentle, however she needs someone to be blunt.

She is in denial by the sounds of it and she is heading for serious complications.
I would try and have a chat with her, be assertive, but be caring as well. It's like a smoker, if they are told they should should stop smoking because of A, B, and C they wont do it, it is always down to the person to want to do it, change. Send her diabetes leaflets a magazine, even a letter if you would like, as having it in black and white may make her think twice about the damage she is doing to her body.
It could be diabetes burnout, good luck.

1. 
   
   For anyone going through tough times regarding their diabetes management and from reading on the forum how some younger type 1 members really, really struggle, this is a must read for all.Remember you are not alone.
   
   Connecting people with diabetes
   
   Putting the Brakes on Diabetes Burnout
   
   
   Helen Edwards; Founder and Director Diabetes Counselling Onlinewww.diabetescounselling.com.au
   Diabetes burn out is a common problem for many people, but what is it? Basically this occurs when you grow very tired of managing your diabetes. You might experience feelings of exhaustion and instead of sticking to your regular blood glucose checks, medications, exercise, insulin and other self care tasks, you only do them partially or possibly neglect them altogether for a period of time. It is more than just having a bad day. You just can’t seem to muster the motivation to keep on managing and the guilt and stress about what this is doing to your body just builds up…..adding to your distress.
   
   The challenge for people living with diabetes and this includes family members and caregivers, is to walk the fine line between stress and worry about diabetes, with feeling comfortable about where diabetes sits in your life. You need to try and have perspective about what your goals are and what you can realistically manage at this moment. When you balance this you are able to better manage under times of stress and prevent burn out. One of the biggest things that can help is to have good support. This includes from family, friends, other people with diabetes and your health care team. Exercise and relaxation strategies really help. Learning mindfulness, which teaches you to worry less and be present in your daily life helps to reduce anxiety and distress. Being able to feel in control and have a tool kit for what to do when things feel like they may be getting out of control in any aspect of your life really makes a difference. Diabetes is not just about your blood glucose and stress and problems in other areas of life will have an impact on you control. So it is important to make sure you stay healthy in all areas of your life and keep on top of stress.
   
   Diabetes is different to other chronic disease as it requires self management by you on a daily even hourly basis, with guidance from your health care team. It can be easy to become overwhelmed by all the tasks you need to do and the day to day effort needed to manage. Burn out is particularly likely if you work really hard at managing your diabetes but the results are not what you would like. It is also more likely when you have pressure or stress in other areas of your life that you feel you can not control. Diabetes burn out can last a short time, be ongoing, or can come and go. Studies have shown that a majority of people living with diabetes do experience worries, fears and negative feelings at some stage. Some high risk times where you may experience burn out due to added stress or changes in your life include:
   
   1. If you are not meeting diabetes targets, frustration with lack of movement towards your health goals
   2. Experiencing family/relationship problems, breakdown or violence
   3. Transition or times of change in your life
   4. Loss of someone you care about or other grief/loss
   5. Experiencing poverty or homelessness
   6. Drug and alcohol problems
   7. Problems with work and financial stress
   8. Other physical or mental health problems – such as another chronic disease, depression, mental illness, eating disorders
   9. Pregnancy – planning pregnancy and trying to conceive, during pregnancy and parenting when you have diabetes yourself
   10. Growing older and dealing with changes to your body, your health and your diabetes
   11. Diagnosis of diabetes complications
   The recent 2011 study Diabetes MILES which surveyed over 3000 adults with diabetes in Australia found that overall, people were least satisfied with their health, as compared to other aspects of their life. Adults with type 2 diabetes who were using insulin had lower levels of satisfaction across all life areas (e.g. health, relationships, safety, standard of living) as compared to adults with type 1 diabetes or with those who had type 2 diabetes but were not using insulin. Adults with type 2 diabetes who were using insulin were also more likely to experience moderate to severe symptoms of depression and anxiety than other respondents. Moderate to severe depressive symptoms affected 35% of adults with type 2 on insulin, as compared to 22% of those with type 1 and 23% of those with type 2 who were not using insulin. Moderate to severe anxiety symptoms also affected 19% of adults with type 2 who were using insulin, as compared to 15% of those with type 1 and 14% of those with type 2 non-insulin-managed diabetes. Adults with type 1 diabetes were more likely to experience severe diabetes-related distress than other respondents. 28% of adults with type 1 diabetes experienced severe distress, as compared to 22% of people with type 2 insulin-managed and 17% of type 2 non insulin-managed diabetes. The most commonly reported problem area for respondents (consistent across diabetes types and treatment regimens) was worrying about the future and the development of diabetes related complications.
   
   Rates of diabetes related distress are high yet people are often scared to ask for help, particularly if they have not been managing well. It is important that you DO ask for help and remember there is no such thing as a silly question! Most of us get tired of doing everyday tasks and diabetes sure adds to those! Few people can maintain all the tasks of diabetes care week-in, week-out AND keep blood glucose and HbA1c’s in the narrow target range all the time. Without realistic expectations and practical strategies for managing the thoughts, feelings and emotional side of diabetes, the risk of burnout is higher. The way we think and talk about diabetes has a major impact on how we feel and manage diabetes. Using words like “ high and low” blood glucose instead of “good and bad” can help and so does using CHECK instead of the word TEST when talking about blood glucose monitoring. The reality is most people have an immediate reaction to a high or low BGL. That is normal and fine, but once you have this reaction move on to looking at the number and working out how to manage this and prevent it in the future if possible.
   
   Seven Steps to dealing with Burn out
   
   1. Consider what particular areas of diabetes are causing you problems – usually it is not all of it! Then develop steps for sorting these areas. Get help if needed.
   2. What else is happening in your life that might be conflicting with diabetes care, or making it harder?
   3. How might you address these things?
   4. What are your expectations for your diabetes management? Do you need to lower or increase your expectations?
   5. What sorts of thoughts and feelings are you having about diabetes/
   6. How are you managing these and are these strategies working? What have you tried?
   7. Do you have any support? Is it the right support? Is it enough support? If not, how can you get this?
   Support is vital. Make sure you get this from a variety of sources:
   
   • Health Care Team
   • Family and friends
   • People with diabetes
   • Online and in person
   • Books, magazines and other sources of information
   • Counselling and other specialists
   • Take time out from diabetes and other stress – try to be a “human being” not always a “human doing”!
   Diabetes might thrive on maths – to be corrected and added up BUT You are not a maths problem! See yourself as a sunset – not something to be solved, but appreciated –your achievements, attempts at change, dreams and goals – sit back and appreciate them from time to time and remember there is more to life than diabetes.
   
   DIZZY and DORY <3

 

[catapillar]

I agree, she needs telling straight and that her attitude to it all stinks. I think she's one of those who only hears what she wants, and those who have tried to talk some sense have tried to be gentle, however she needs someone to be blunt.

I think it's a bit unfair to say her attitude stinks - by its very nature, people don't choose to be in denial, it's a psychological protective mechanism to keep them from things they can't cope with.

I would agree that it sounds like the denial needs to be broken with a blunt explaination of the facts. But if you really think the poor control stems from denial, the blunt explanation doesn't need to be accompanied by blame.

 

[azure]

I agree, she needs telling straight and that her attitude to it all stinks. I think she's one of those who only hears what she wants, and those who have tried to talk some sense have tried to be gentle, however she needs someone to be blunt.

I agree with part of that, but I think she can't help her attitude - it's a defence.

Calm, straightforward repetition of the facts without anger or judgement is the way forward in my opinion. Correct her wrong assertions with calm facts and repeat them until she hopefully concedes she's not doing as she should. It's not her fault. She's built a wall and you need to get through it, but not with a sledgehammer, more by taking out the bricks one by one.

If she's really struggling, see if there's psycholoigical help available from her team.

 

[Juicyj]

Couldn't agree more. Some years back I was living a similar life and I can tell you now no matter what anyone said or how they put it, made no difference. The only real way someone with this outlook will ultimately change things around is if they want it to happen. How that stage is reached however is the hard part. I can appreciate it must be incredibly frustrating.

Agree with @catapillar and @JPTS - she needs to accept she needs help and that has to come from her, her hospital visit should of been a wake up call and this may still re-ignite her thinking to knowing deep down something is massively wrong and needs changing, the simple fact her insect bite became septic is a massive wake up call for any type 1 and the need to address those high BG readings. It's interesting to hear from those who have been in denial in the past as to what the turning point was - there is always a trigger to these situations.

 

[MickyFinn]

I think it's a bit unfair to say her attitude stinks - by its very nature, people don't choose to be in denial, it's a psychological protective mechanism to keep them from things they can't cope with.

I would agree that it sounds like the denial needs to be broken with a blunt explaination of the facts. But if you really think the poor control stems from denial, the blunt explanation doesn't need to be accompanied by blame.

To be honest, she's running rings around the hospital staff and thinks it's funny to do so. She has a set time for antibiotic treatment in the evenings apparently, and the nurse asked her to remain on the ward, so it could be administered next. She ignored that and cleared off downstairs to smoke, only came back 20 minutes later and declared that she was ready for the treatment, but had managed to knock the cannula out of her arm. She eats before a scheduled operation and gets it cancelled, and is apparently unrepentant. She should have one last been in two or three days for treatment on her infected arm, yet it's now two weeks, and she has been the direct cause of the prolonged stay. I could go on, but suffice to say, her attitude really isn't acceptable.

If I was in the hospital, I would do whatever I could to make sure I will in there no longer than I needed to be. I certainly wouldn't pull cannulas out, or go missing for scheduled treatment etc and try to cause as much disruption as I could. How long before her antics start to impact on other patients? So yes, it stinks, and from what I have been told last night, I am wondering if anyone can get through to her.

I might add that she has removed three cannulas herself in the past two weeks.

 

[MickyFinn]

I agree with part of that, but I think she can't help her attitude - it's a defence.

Calm, straightforward repetition of the facts without anger or judgement is the way forward in my opinion. Correct her wrong assertions with calm facts and repeat them until she hopefully concedes she's not doing as she should. It's not her fault. She's built a wall and you need to get through it, but not with a sledgehammer, more by taking out the bricks one by one.

If she's really struggling, see if there's psycholoigical help available from her team.

I have been told that an awful lot of people, both her immediate family, and her diabetes team have tried relating the facts so many times, so repeatedly they are now blue in the face. She seems intent on driving them all away and refusing any help. After years of trying to provide her with the facts and talk sense, apparently they are beginning to give up.

I agree she has psychological problems, and she is in denial, but possibly on a scale that few have seen before. The more I find details out, the more I find myself incredulous. Like you, I thought she might just need the facts of diabetes explaining, however, it may have gone far beyond that.

Is it possible that she has gone so far that she has not so much gone over the edge, but has actually long since forgotten what the edge looks like?

 

[Indy51]

Sadly, maybe the only solution is having her sectioned or whatever it's called in the UK? It's obvious she's a danger to herself.

 

[MickyFinn]

I know this doesn't help in the long run but, the packets of biscuits she's having in hospital - who is buying/supplying her with these?

As @Emily101 asked, how old is she? I'm assuming she's an adult & lives alone/without her parents?

I am not 100% sure who supplied her with the biscuits. It could easily have been a family member, but there is a convenience shop alongside the ubiquitous Costa Coffee on site in the hospital foyer, she can get them herself if she wants.

She's 45 and has three children of her own, two of which are young adults. Even my mother, who has more patience than anyone I know, has said there's no talking to her.