Why did the insulin die in my pancreas?

I was blessed to meet Liz Yarker by sheer accident just over a year ago. From our very first conversation, we immediately clicked. In fact, two hours later, I was so overwhelmed that I had just listened to a stranger describe my life as a carer of a person with Diabetes. We silently established a strong and incredible friendship that night.

We still have that special “chemistry”, Liz and I. We are both passionate Diabetes Advocates, and would go to the ends of the earth to make life easier for each other. Liz’s husband, and my dear friend James, suffers from an incredibly complex, rare, challenging and cruel endocrine condition, known as APECED. He has numerous life threatening conditions- Type 1 Diabetes and Addison’s Disease to name the worst of many. His life depends on constant insulin infusions, and consuming countless tablets a day. Liz has recently had to make the difficult decision to stop working, as James’s condition has become even more vulnerable, and without her constant care, she was petrified of coming home and finding him unconscious..or worse. She would often have to call work just as she was due to commence and inform them that James had suffered a severe hypoglycaemic attack and needed constant care for the rest of the day.

Fast foward to the past month…more health concerns have arisen. Liz and James are absolutely inspirational considering the devastating news that they were bludgeoned around the head with. Liz and I are both young women, who have bright futures ahead of us. However, it has been only recently that we realised that we are very much trapped…alone..and isolated. (Liz lives at the bottom of the Southern Henisphere in Tasmania, whilst I am residing near Brisbane. We rely heavily on MSN Messenger to communicate!) We compiled these questions together, and answered them individually. Being a carer of a 24 year old man, or in my case, a seven year old boy may sound like a slight inconvenience. This interview has been compiled and published to crack that myth wide open, and so that others’ can get an insight into what we do to on a daily basis to keep our loved ones’ alive.

Lizzie, describe yourself in five words..
Impatient, friendly, reliable, loving and caring

How has being a carer for James changed who you are, and where you thought you would be as a 26 year old woman?
I feel like I am more of a nag than I would like to be. I thought that at 26 I would be working full time as an Occupational Therapist. I recently got approved for the carers pension and I was so excited! I never thought I’d be so excited to be on a pension.

Do you feel that people who aquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for James?
I don’t think many people at all are aware of the care I provide.

How difficult is it for you to have time that is specifically set out for YOU?

Almost impossible. I don’t really have any time for myself at all anymore. Whenever I am doing anything part of my brain is thinking about where James is, what he is doing, if I can hear him – and if I can’t is it because he is just being quiet or because he is unconscious.

Do you feel naked without a glucometer in your handbag? Yes! My handbag has at least quadrupled in size lately. I never go anywhere without a glucometer, glucagon, solu-cortef, a can of drink and a few muesli bars.

Do you think that if a group of twenty people of various ages and backgrounds were asked about Diabetes and what they knew about it, that they would consider it ridiculous for a person with Type 1 Diabetes to receive a carers payment?

Yes. In my experience most people who have any knowledge of diabetes think that it’s a simple matter of changing your diet, having a tablet, or at worst injecting some insulin and you are ‘fixed’.

When you are so used to picking up the pieces of a severe hypoglycaemic attack where the reading is between 1 and 2mmol/L, does it frustrate you when you hear or read about other’s who talk about a hypo, and catagorizing it as ‘severe’ and their blood sugar level reading was 5mmol/L, do you feel like you are talking about the same condition?
It is very frustrating! I think the thing that annoys me the most is that it makes me so jealous! I would love to be able to complain about a severe hypo of 4 or 5!

How do you feel when you receive almost no support from diabetes specialists? I don’t expect support from diabetes specialists, I feel that they don’t really know what it is like to live with diabetes as another member of the family.

Would you justify that the following statement is correct? James’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same?

It is correct.

What do you hope that the future holds for you and James? I hope that we can both get back to work. It’s probably an unrealistic hope but it’s still my hope.

If you were not on alert continuously, do you believe that James could get through the day without you? Yes and no. I reckon he could make it through one day – if he didn’t have a hypo or an Addisonian crisis, and he remembered to have his tablets. However, the chances of this happening is pretty slim so no.

Do you go through periods where you feel like you are totally overwhelmed with so much see-sawing and sleeplessness? Yes. I get frustrated and annoyed at APECED. I get cranky when I am sleep deprived and so that doesn’t help matters.

How does your role of caring impact on your role of being James’s wife? Caring comes first. When we are talking and something doesn’t make sense, I think about his level.

Can you go out by yourself without making contact with James to ensure that he is ok? No! I have to message him or ring him to make sure that he hasn’t gone to have a sleep and his level has dropped. When I was working I used to have my mobile on me all the time so that I could check in.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I vent to you, Katey, and to Dan. I sometimes vent to James – but that is hard and it is usually only when I am incredibly frustrated. It is hard to talk to James about my frustration and fear without him feeling like it is all his fault and I make sure he knows that it’s not him I am frustrated with.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for James? Our current GP does. He is really good and knows how much care James needs. Normally though I wouldn’t believe that a GP would know what I do. Considering they mostly have never heard of APECED, the wouldn’t know how much work it takes.

Do you feel like you have Type 1 Diabetes? Yes. I actually think it would be much easier for me to handle if I had it, rather than being a carer for someone with it.

Because you can’t FEEL what a hypoglycaemic episode is like, do you feel discriminated against by the diabetic community because you don’t have diabetes, yet you treat them constantly and help James to pull through them? YES! I may not have physically felt a hypo but I know the symptoms, I have used glucagon, I know how to treat a hypo, how many carbs to give. I do the work to fix the hypo. I get hurt by comments made when James is hypo and then have to try and forget them because they aren’t ‘real’ comments, they are the comments of a sugar deprived brain.

Does anyone else with Diabetes have the right to make assumptions about how James is reacting to a hypo? No. No one with diabetes knows how anyone else with diabetes experiences the condition. They have more right than someone without diabetes, who has no real knowledge of it, but they still have no right. Did that make sence?

Do you have a instant kindredship with other carers of loved ones with Type 1 Diabetes? Not always… it depends on how diabetes affects their loved one. If they are the carer of a person who has ‘severe’ hypos of 4 – then I have little in common with them.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? I don’t know anymore how I feel about type 3 diabetes. I feel like James’s diabetes is also my diabetes, so how could he have type 1, and I have type 3. It’s a clever name and does help to explain the extent that carers are affected by diabetes, but I think that it will add to the confusion over the types.

Do you feel that carers get enough support? No. I think that carers of people with severe physical disabilities get more support – with respite available to them, but people who care for people with diabetes don’t get enough support.

Do you feel that the visually disturbing, heartbreaking and challenging situations that present themselves in a person with Diabetes would be enough to traumatise their carer? For sure. It is very traumatic to see your loved one unconscious – and to have to try and calmly deal with it is impossible. Knowing that each time we get into bed, I could wake up with James unconscious next to me, makes me never want to go to sleep.

Do you think that the diabetic community take into consideration situations such as: sitting on top of your thrashing child to give them a sugary drink, administering glucagon injections to a person who is clearly conscious and disorientated, receiving physical injuries whilst trying to treat a hypo, or even being all alone with no one to help you whilst you wait second by second for James’s eyes to flicker open? I think they think about it, they are grateful for people who help them, but I don’t think they stop to think about the affect of their hypo on their loved ones. I don’t think that they CAN think about it – because I know if I was in their shoes I wouldn’t want to consider the impact of my condition on my loved ones. It is horrible that people need to go through hypos and experience the after effects of them, but carers go through a lot too. I am the one who gets hurt by comments made when hypo, I am the one who has to stick a huge needle into James’s leg, I need to put him into the recovery position, I have to watch to make sure he keeps breathing, I need to watch the clock to know when to ring an ambulance if the glucagon doesn’t work, I need to check James’s level every minute to see which direction it is going, I need to get the soft drink and straw and make sure James is able to drink it without choking on it. I am responsible for saving his life – and I am expected to do it calmly. While all this is happening James has no idea what is going on. His first idea that anything different has happened is when he wakes up and sees the glucagon box.

Because you don’t have diabetes, do you feel as if you don’t have the right to make comments or compare situations with those that do have diabetes? I feel that my comments aren’t taken seriously and that I don’t know what I’m talking about – but I still make comments and compare situations.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for James? YES! Carers live off a wage that is $200 less than the federal minimum wage yet we work 24/7. When I was working I was getting paid more than I do now – and I was only working part-time!

Do you have anyone who could step into your shoes if a situation arose? Not in Tasmania. If anything major happened I know that my family and James’s would try to step into them – but so much has changed with his care lately.

Do you fear for your own health and safety, knowing how much James depends on you to survive? Yes. I worry about getting sick and having to go to hospital myself.

When you are asked to provide your job description, and you reply “full time carer”, do you feel as if people are quietly judging you and James? Well in this case I am lucky to live in Tasmania. Before I had to stop work I worked as an assistant nurse in a nursing home – a position which is referred to as a ‘carer’ here in Tasmania. So people assume that’s what I still do.

Despite your complete devotion and adoration of James, on your 21st birthday, what dreams and hopes did you have for yourself at this stage of your life? When I was 21, I was still studying Early Childhood Education so I guess I thought I would be working as a teacher in a long day care centre, and probably have a kid of my own by now as well. I definitely never thought I’d give up work at 26 to become a full time carer to my husband.

When James needs hospitalization, how does it make you feel when hospital staff ask you what “you would do in this situation” or ask you to monitor BSLs?

Does the average Australian give enough credit to an everyday person who has given up their quality of life to ensure that their loved ones are cared for appropriately? No. And that is reflected by the state of carer payments.

Does the term “carer” equate to “unemployed” in the opinions of some?

Professor Robert Cummins (Deakin University) says of the results of his study into carer wellbeing: “We have been doing research in this area for more than six years … and I’m not aware of any group that has ever been found to have a wellbeing score as low as carers”. Professor Cummins also said that the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.” What do you think contributes to this? Most carers don’t choose to be carers. They have the job thrust upon them when something causes their loved one to require care. I think that the lack of choice, coupled with the restrictions imposed upon then as a result of caring, result in lower wellbeing. Carers are isolated, and live on a wage that is lower than the federal minimum wage, they work when they are sick, work overtime, and they feel guilty when they take time out for themselves.

When you describe yourself as a carer, have you had the experience where people assume that James is disabled or mentally retarded? As I mentioned earlier people in Tassie assume that I am a worker in a nursing home when I say I am a carer!

How much of your day is taken up by carer responsibilities? All of it. Even when I am doing other things I am thinking about James, what his level is, what he is doing, what he has eaten, why he is quiet, did he have his tablets?, when did I last put his eye drops in and therefore when is he due for more eye drops, did he bolus for the food he ate, is his infusion site working, when does that need changing again?

Do you think James is aware of how much stress, time and commitment is required to perform you daily duties? Yes he is. I try to make sure he knows… in a way that doesn’t make him feel bad about how much stress I feel.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects James? Yes. Especially disagreeing with my knowledge. Being a carer in a nursing home was frustrating as the RNs had the final say and would question my ability to treat hypos in the elderly residents. I remember once being on nightshift and having to argue with the RN on duty to perform extra BSL checks overnight on a resident who had just started a new long acting insulin. She refused to believe that I knew anything about the insulin – even though she knew James has diabetes.

When you have concluded reading this interview, Liz has probably performed one of her many duties that so many take for granted. Her mind may be racing with thoughts of how the next hour will pan out. It’s NEVER ENDING. There are no holidays, no time off, no special privileges.. it’s a constant battle against the revolt in James’s body that causes these reactions to occur. At the age of 26, Lizzie is nothing short of a heroine that I have grown to admire and cherish.